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          "en" => "<p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Barriers to transition in cystinosis&#46;</p>"
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    "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">Medical advances have transformed cystinosis from a historically fatal childhood disease<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;2</span></a> into a chronic adult disease<a class="elsevierStyleCrossRef" href="#bib0265"><span class="elsevierStyleSup">3</span></a> with longer life expectancy&#46;<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">4</span></a> Nevertheless&#44; the transfer of young patients to adult units has led to interruptions in their medical care&#44;<a class="elsevierStyleCrossRef" href="#bib0275"><span class="elsevierStyleSup">5</span></a> inadequate patient follow-up and worsening of the disease&#46;<a class="elsevierStyleCrossRef" href="#bib0280"><span class="elsevierStyleSup">6</span></a> The acknowledgment of several factors underlying this situation illustrates the need to implement specific programs for the transition of adolescent cystinosis patients to adult care&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;8</span></a></p><p id="par0010" class="elsevierStylePara elsevierViewall">Cystinosis is a rare &#40;RD&#41;&#44;<a class="elsevierStyleCrossRef" href="#bib0255"><span class="elsevierStyleSup">1</span></a> severe systemic disease caused by mutations in the CTNS gene &#40;17p13&#41; that alter cystinosin synthesis&#44; resulting in the accumulation of lysosomal cystine crystals in all body cells&#46;<a class="elsevierStyleCrossRefs" href="#bib0260"><span class="elsevierStyleSup">2&#44;9&#44;10</span></a> With an incidence of 1&#47;100&#44;000&#8211;200&#44;000 newborns&#44;<a class="elsevierStyleCrossRef" href="#bib0255"><span class="elsevierStyleSup">1</span></a> cystinosis is characterized by early renal involvement that evolves to kidney failure with corneal crystal deposits and other progressive extra-renal manifestations&#46;<a class="elsevierStyleCrossRef" href="#bib0305"><span class="elsevierStyleSup">11</span></a> Control of this disease requires a strict and complex therapeutic regimen<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;5&#44;6</span></a> together with rigorous periodic monitoring of cystine concentrations in granulocytes throughout the patient&#39;s life&#46;<a class="elsevierStyleCrossRefs" href="#bib0295"><span class="elsevierStyleSup">9&#44;11&#44;12</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Cystinosis use to be an exclusively pediatric disease and patients would die prematurely from kidney failure before the end of the first decade of life&#46;<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;4</span></a> The availability of specific treatment with cysteamine<a class="elsevierStyleCrossRefs" href="#bib0260"><span class="elsevierStyleSup">2&#44;13</span></a> and the success of pediatric kidney transplant &#40;KTx&#41; programs<a class="elsevierStyleCrossRefs" href="#bib0320"><span class="elsevierStyleSup">14&#44;15</span></a> now prolong patient survival to over 50 years&#46;<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">4</span></a> Consequently&#44; a growing number of adolescents and young adults with cystinosis are being admitted to adult units where the number of experts in this rare disease is extremely low&#46;<a class="elsevierStyleCrossRef" href="#bib0330"><span class="elsevierStyleSup">16</span></a> Furthermore&#44; since unexpected clinical worsening has been observed in many cases after these transfers&#44; it is a matter of concern that the clinical progress achieved in pediatric patients tends to decline in adulthood&#46; Numerous risk factors converge to explain this situation such as&#58; &#40;a&#41; the inherent difficulty in caring for an adolescent&#47;young adult with a chronic disease who has usually received a kidney transplant<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">5&#44;6</span></a> and thus has a high risk of graft loss<a class="elsevierStyleCrossRef" href="#bib0285"><span class="elsevierStyleSup">7</span></a>&#59; &#40;b&#41; the lack of experience and familiarity of adult patient especialists with this RD<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">4</span></a>&#59; &#40;c&#41; extra-renal involvement progression<a class="elsevierStyleCrossRef" href="#bib0330"><span class="elsevierStyleSup">16</span></a>&#59; &#40;d&#41; non-compliance with treatment&#44; which is common in this specific patient population&#44;<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">5&#44;17</span></a> and &#40;e&#41; the lack of experts close to the patient&#39;s place of residence&#46;<a class="elsevierStyleCrossRef" href="#bib0290"><span class="elsevierStyleSup">8</span></a> Thus&#44; various healthcare strategies for RD have been proposed including referrals to centers of expertise&#44; among others&#46;<a class="elsevierStyleCrossRefs" href="#bib0340"><span class="elsevierStyleSup">18&#44;19</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">Cystinosis represents the paradigm of RD that requires a guided transition to adult medical care&#46; Owing to the specific characteristics of the disease<a class="elsevierStyleCrossRefs" href="#bib0265"><span class="elsevierStyleSup">3&#8211;5</span></a> patients face unique challenges during the transfer process to adult units&#44;<a class="elsevierStyleCrossRefs" href="#bib0280"><span class="elsevierStyleSup">6&#44;7&#44;20</span></a> which usually follows a generalized pattern&#46;<a class="elsevierStyleCrossRef" href="#bib0355"><span class="elsevierStyleSup">21</span></a> In Spain&#44; there are currently around 60 patients with cystinosis&#44; 30&#37; of whom are children&#44; 17&#37; adolescents and the rest are adults who&#44; in some cases&#44; continue to receive treatment in pediatric units&#46; Thus&#44; it is imperative to implement healthcare strategies to educate patients about their disease&#44; promote self-care and organization&#44; and support their transition to adult care&#46;<a class="elsevierStyleCrossRef" href="#bib0335"><span class="elsevierStyleSup">17</span></a> This proposal is intended as a useful tool for healthcare professionals to facilitate the planning of a coordinated transition for cystinosis patients in our healthcare setting&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Methodology</span><p id="par0025" class="elsevierStylePara elsevierViewall">This work is the result of different methodologic strategies implemented by the T-CiS&#46;bcn group&#58; &#40;1&#41; a literature search on PubMed using the following key words&#58; &#8220;cystinosis&#8221;&#44; &#8220;transition&#8221;&#44; &#8220;adolescent&#8221;&#44; &#8220;renal transplant&#8221; and &#8220;adherence&#8221;&#59; &#40;2&#41; a survey carried out on members of the T-CiS&#46;bcn group themselves to identify the needs and challenges of transition in the healthcare setting and favor the implementation of improvement strategies&#59; and &#40;3&#41; anonymous feedback from cystinosis patients and their relatives of the Spanish Cystinosis Group &#40;<a id="intr0015" class="elsevierStyleInterRef" href="http://www.grupocistinosis.org/">www&#46;grupocistinosis&#46;org</a>&#41;&#44; represented by the Spanish Association for Information and Research on Genetic Renal Disease &#40;AIRG-E&#59; <a id="intr0020" class="elsevierStyleInterRef" href="http://www.airg-e.org/">www&#46;airg-e&#46;org</a>&#41;&#46;</p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Theoretical framework&#58; healthcare strategies for rare diseases in the European Union</span><p id="par0030" class="elsevierStylePara elsevierViewall">The European Union defines a disease as rare when it affects no more than 5 in 10&#44;000 individuals&#46; There are approximately 8000 different RD&#44; affecting up to 8&#37; of the population&#46; The majority suffer from ultra-rare diseases&#44; i&#46;e&#46; those with a frequency of &#8804;1 in 100&#44;000&#44; which render these patients particularly vulnerable and isolated&#46;<a class="elsevierStyleCrossRef" href="#bib0355"><span class="elsevierStyleSup">21</span></a> The European Commission has defined and adopted several preventive&#44; diagnostic and treatment strategies for RD&#44; aimed at improving healthcare access and equity among affected patients and ultimately improving their quality of life&#46; The healthcare policies of each EU member state are based on the following Council Recommendations<a class="elsevierStyleCrossRef" href="#bib0360"><span class="elsevierStyleSup">22</span></a>&#58;<ul class="elsevierStyleList" id="lis0005"><li class="elsevierStyleListItem" id="lsti0005"><span class="elsevierStyleLabel">&#40;1&#41;</span><p id="par0035" class="elsevierStylePara elsevierViewall">Produce and adopt RD action plans and strategies based on the healthcare systems and social services of each country&#46;</p></li><li class="elsevierStyleListItem" id="lsti0010"><span class="elsevierStyleLabel">&#40;2&#41;</span><p id="par0040" class="elsevierStylePara elsevierViewall">Define&#44; encode and produce RD registers&#46;</p></li><li class="elsevierStyleListItem" id="lsti0015"><span class="elsevierStyleLabel">&#40;3&#41;</span><p id="par0045" class="elsevierStylePara elsevierViewall">Foster research on RD&#46;</p></li><li class="elsevierStyleListItem" id="lsti0020"><span class="elsevierStyleLabel">&#40;4&#41;</span><p id="par0050" class="elsevierStylePara elsevierViewall">Identify centers of expertise &#40;CE&#41;&#44; create European RD reference networks based on multidisciplinary healthcare&#44; and to divulgue knowledge&#46;</p></li><li class="elsevierStyleListItem" id="lsti0025"><span class="elsevierStyleLabel">&#40;5&#41;</span><p id="par0055" class="elsevierStylePara elsevierViewall">Centralize RD experience&#58; good clinical practise guidelines and training programs on the diagnosis and treatment of RD&#59; facilitate access to orphan drugs and clinico-therapeutic assessment reports&#46;</p></li><li class="elsevierStyleListItem" id="lsti0030"><span class="elsevierStyleLabel">&#40;6&#41;</span><p id="par0060" class="elsevierStylePara elsevierViewall">Promote the empowerment of patient associations &#40;PA&#41; through their involvement in developing healthcare policies and providing access to up-to-date information on RD&#46;</p></li><li class="elsevierStyleListItem" id="lsti0035"><span class="elsevierStyleLabel">&#40;7&#41;</span><p id="par0065" class="elsevierStylePara elsevierViewall">Ensure sustainability i&#46;e&#46; the long-term maintenance of information&#44; research and healthcare structures&#46;</p></li></ul></p><p id="par0070" class="elsevierStylePara elsevierViewall">In order to comply with recommendation N&#176;4&#44; the European Union Committee of Experts on Rare Diseases &#40;EUCERD&#41; defined the following criteria for the designation of a CE<a class="elsevierStyleCrossRef" href="#bib0355"><span class="elsevierStyleSup">21</span></a>&#58;<ul class="elsevierStyleList" id="lis0010"><li class="elsevierStyleListItem" id="lsti0040"><span class="elsevierStyleLabel">&#40;1&#41;</span><p id="par0075" class="elsevierStylePara elsevierViewall">Volume of relevant healthcare activity and capacity to offer quality services&#46;</p></li><li class="elsevierStyleListItem" id="lsti0045"><span class="elsevierStyleLabel">&#40;2&#41;</span><p id="par0080" class="elsevierStylePara elsevierViewall">Capacity to provide expert advice and clinical diagnoses&#44; and produce and implement clinical protocols and quality control&#46;</p></li><li class="elsevierStyleListItem" id="lsti0050"><span class="elsevierStyleLabel">&#40;3&#41;</span><p id="par0085" class="elsevierStylePara elsevierViewall">Multi-disciplinary healthcare&#46;</p></li><li class="elsevierStyleListItem" id="lsti0055"><span class="elsevierStyleLabel">&#40;4&#41;</span><p id="par0090" class="elsevierStylePara elsevierViewall">High level of expertise and experience documented through publications&#44; grants and training courses&#46;</p></li><li class="elsevierStyleListItem" id="lsti0060"><span class="elsevierStyleLabel">&#40;5&#41;</span><p id="par0095" class="elsevierStylePara elsevierViewall">Concerted contribution to research&#46;</p></li><li class="elsevierStyleListItem" id="lsti0065"><span class="elsevierStyleLabel">&#40;6&#41;</span><p id="par0100" class="elsevierStylePara elsevierViewall">Involvement in epidemiologic surveillance&#58; patient registries&#46;</p></li><li class="elsevierStyleListItem" id="lsti0070"><span class="elsevierStyleLabel">&#40;7&#41;</span><p id="par0105" class="elsevierStylePara elsevierViewall">Close links and collaboration with other centers of excellence&#46; Involvement in research networks&#46;</p></li><li class="elsevierStyleListItem" id="lsti0075"><span class="elsevierStyleLabel">&#40;8&#41;</span><p id="par0110" class="elsevierStylePara elsevierViewall">Capacity to interact with Patient Associations &#40;PA&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0080"><span class="elsevierStyleLabel">&#40;9&#41;</span><p id="par0115" class="elsevierStylePara elsevierViewall">Advisory service&#46;</p></li><li class="elsevierStyleListItem" id="lsti0085"><span class="elsevierStyleLabel">&#40;10&#41;</span><p id="par0120" class="elsevierStylePara elsevierViewall">Proven capacity for clinical patient follow-up&#46;</p></li></ul></p><p id="par0125" class="elsevierStylePara elsevierViewall">Spain approved the Rare Diseases Strategy of the National Health System in June 2009&#46;<a class="elsevierStyleCrossRef" href="#bib0365"><span class="elsevierStyleSup">23</span></a> Likewise&#44; the Spanish Federation for Rare Diseases &#40;FEDER&#59; <a id="intr0025" class="elsevierStyleInterRef" href="http://www.enfermedades-raras.org/">www&#46;enfermedades-raras&#46;org</a>&#41; acts on behalf of the 3 million individuals with rare diseases in Spain&#46;</p></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">What is transition&#63;</span><p id="par0130" class="elsevierStylePara elsevierViewall">Transition is a planned&#44; anticipated and coordinated process that aims to prepare and transfer the pediatric patient from guardian-care to an adult unit where they will become responsible for their own self-care&#46;<a class="elsevierStyleCrossRef" href="#bib0370"><span class="elsevierStyleSup">24</span></a> The transition phase will be gradual&#44; progressive and adapted to the patient&#39;s individual maturity&#44; which often fails to match the approved age at transfer&#46; This process must ensure that the patient receives adequate and continued care during the changeover&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;25</span></a></p><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Why is transition important&#63;</span><p id="par0135" class="elsevierStylePara elsevierViewall">The lack of organizational strategies in the transition phase has often led to unpredictable worsening of the patient&#39;s health&#46;<a class="elsevierStyleCrossRefs" href="#bib0370"><span class="elsevierStyleSup">24&#44;25</span></a> Historically&#44; very severe complications were observed in young patients with chronic diseases shortly after being transferred to adult units&#46;<a class="elsevierStyleCrossRef" href="#bib0380"><span class="elsevierStyleSup">26</span></a> This was especially evident in KTx cases&#44; with graft loss being particularly common&#46;<a class="elsevierStyleCrossRef" href="#bib0290"><span class="elsevierStyleSup">8</span></a> In fact&#44; adolescents and young adults who have received a KTx are known to be the group with the worst prognosis&#44;<a class="elsevierStyleCrossRef" href="#bib0385"><span class="elsevierStyleSup">27</span></a> and it is generally agreed that adolescents are incapable of undergoing the transition to adult care alone with guaranteed success&#46; When faced with the temptation to blame the patient for this situation&#44; it is important to consider that the healthcare system does not cater to the needs and specific characteristics of this population&#44;<a class="elsevierStyleCrossRef" href="#bib0380"><span class="elsevierStyleSup">26</span></a> where dissociation between the patient&#39;s chronological age and physical&#47;psychologic maturity is common &#40;development is not usually complete until the patient has reached 25 years of age&#41;&#46; Similarly&#44; many patients present some form of disability&#44; which impedes their full autonomy&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;28</span></a></p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Characteristics of cystinosis</span><p id="par0140" class="elsevierStylePara elsevierViewall">In the case of adolescent cystinosis patients&#44; the transfer to adult specialists is even more difficult given the characteristics of the disease&#44; which is systemic and progressive&#46;<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;3</span></a> This explains the great impact it has on personal and physical development&#44;<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">5&#44;16&#44;19&#44;20</span></a> which is often associated with significant dependence and impairment&#46;<a class="elsevierStyleCrossRefs" href="#bib0265"><span class="elsevierStyleSup">3&#44;29&#8211;32</span></a> It should be emphasized that patients reach adult age because they have had personalized care and multidisciplinary attention during their childhood which must be continued into adulthood&#46;<a class="elsevierStyleCrossRef" href="#bib0335"><span class="elsevierStyleSup">17</span></a> The need for greater medical attention compared to other patients<a class="elsevierStyleCrossRefs" href="#bib0350"><span class="elsevierStyleSup">20&#44;25</span></a> explains why the transition of adolescents with cystinosis represents a major challenge not only for the patients themselves but also for their families and the health professionals involved in their care&#46;<a class="elsevierStyleCrossRefs" href="#bib0340"><span class="elsevierStyleSup">18&#44;19</span></a> The characteristics of adolescent cystinosis patients with chronic kidney disease &#40;CKD&#41; are described below<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;3&#44;5&#44;16&#44;29&#8211;33</span></a>&#58;<ul class="elsevierStyleList" id="lis0015"><li class="elsevierStyleListItem" id="lsti0090"><span class="elsevierStyleLabel">&#40;1&#41;</span><p id="par0145" class="elsevierStylePara elsevierViewall">Disharmonic pubertal delay&#58;<ul class="elsevierStyleList" id="lis0020"><li class="elsevierStyleListItem" id="lsti0095"><span class="elsevierStyleLabel">-</span><p id="par0150" class="elsevierStylePara elsevierViewall">Physical development delayed at least 2&#8211;3 years&#46;</p></li><li class="elsevierStyleListItem" id="lsti0100"><span class="elsevierStyleLabel">-</span><p id="par0155" class="elsevierStylePara elsevierViewall">Advanced emotional maturity for age in some areas &#40;skills acquired due to the illness&#41; and developmental delay in others&#46;</p></li><li class="elsevierStyleListItem" id="lsti0105"><span class="elsevierStyleLabel">-</span><p id="par0160" class="elsevierStylePara elsevierViewall">Incomplete brain development &#40;estimated to end at approximately 25 years of age&#41;&#46;</p></li></ul></p></li><li class="elsevierStyleListItem" id="lsti0110"><span class="elsevierStyleLabel">&#40;2&#41;</span><p id="par0165" class="elsevierStylePara elsevierViewall">Progressive and systemic disease involvement &#40;short stature&#44; joint deformities&#44; hypothyroidism&#44; diabetes mellitus&#44; infertility&#44; ocular involvement&#44; cognitive and central nervous system disorders&#44; distal myopathy&#44; cardiovascular involvement&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0115"><span class="elsevierStyleLabel">&#40;3&#41;</span><p id="par0170" class="elsevierStylePara elsevierViewall">High dependency on complex medical treatment and hospital care&#46;</p></li><li class="elsevierStyleListItem" id="lsti0120"><span class="elsevierStyleLabel">&#40;4&#41;</span><p id="par0175" class="elsevierStylePara elsevierViewall">Problems with treatment adherence&#58; polydrug use&#44; high number of doses&#44; adverse and transplant-specific effects&#46;</p></li><li class="elsevierStyleListItem" id="lsti0125"><span class="elsevierStyleLabel">&#40;5&#41;</span><p id="par0180" class="elsevierStylePara elsevierViewall">Difficulty in accepting that they are suffering from a lifelong illness&#44; with severe kidney disease and disability&#46; Active awareness-raising process&#46;</p></li><li class="elsevierStyleListItem" id="lsti0130"><span class="elsevierStyleLabel">&#40;6&#41;</span><p id="par0185" class="elsevierStylePara elsevierViewall">Feeling isolated and excluded from their peer group&#46;</p></li><li class="elsevierStyleListItem" id="lsti0135"><span class="elsevierStyleLabel">&#40;7&#41;</span><p id="par0190" class="elsevierStylePara elsevierViewall">Psychologic exhaustion due to the impact of the disease&#46;</p></li><li class="elsevierStyleListItem" id="lsti0140"><span class="elsevierStyleLabel">&#40;8&#41;</span><p id="par0195" class="elsevierStylePara elsevierViewall">Difficulties at school and in learning&#58; academic delay and problems in social relationships&#44; with bullying being common&#46;</p></li></ul></p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">When and how should the transition be carried out&#63;</span><p id="par0200" class="elsevierStylePara elsevierViewall">The transition process must be personalized and carried out in a gradual&#44; step-by-step manner&#46; The ideal time should be in keeping with the patient&#39;s individual maturity and their willingness to make the change<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;8&#44;20</span></a>&#58;<elsevierMultimedia ident="tbl0005"></elsevierMultimedia></p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Transition plan&#58; stages and acquisition of competences</span><p id="par0205" class="elsevierStylePara elsevierViewall">The purpose of the transition plan is to oversee the patient&#39;s transfer following an established&#44; continuous&#44; uninterrupted therapeutic plan in an efficient and safe manner&#46; In general&#44; there are three chronologic stages&#58; preadolescence &#40;12&#8211;15 years&#41;&#44; adolescence &#40;16&#8211;18 years&#41; and young adulthood &#40;19&#8211;25 years&#41; which correspond to the following respective phases&#58; &#40;1&#41; creation and commencement of the transition plan&#59; &#40;2&#41; educating the patient on self-care and self-responsibility&#44; and &#40;3&#41; the transfer itself<a class="elsevierStyleCrossRef" href="#bib0375"><span class="elsevierStyleSup">25</span></a> &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 1</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0010"></elsevierMultimedia></span></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0105">What are the barriers to transition in cystinosis&#63;</span><p id="par0210" class="elsevierStylePara elsevierViewall">Identifying barriers is a fundamental step in recognising the patient&#39;s strengths and environment&#44; and in improving the coordination and commitment of all parties involved&#46; Child patients are seen by the pediatric nephrologist who focuses his&#47;her attention on systemic involvement&#46;<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">5&#44;6&#44;18</span></a> This coordinated guardian care in pediatrics changes completely when the patient is transferred to adult care&#44; where they are often seen by separate professionals primarily focused on their own speciality&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a> The result is &#8220;fragmented care&#8221;&#44; with negative repercussions on healthcare quality and continuity&#46; This is seen by patients as a step backwards in terms of the care they are receiving and generates a loss of confidence in the medical team and resistance to change&#46;<a class="elsevierStyleCrossRef" href="#bib0340"><span class="elsevierStyleSup">18</span></a> This scenario is further exacerbated by the lack of resources set aside for RD&#46; The result of this situation is reflected in <a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#44; which presents the barriers to transition in cystinosis&#44; some of which are also observed in many other RD&#46;</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0110">How is transition seen by each of the agents involved&#63;</span><p id="par0215" class="elsevierStylePara elsevierViewall">Through surveys conducted on patients and family members&#44; information has been obtained on the impact of the disease along with attitudes towards transition&#46;<a class="elsevierStyleCrossRefs" href="#bib0335"><span class="elsevierStyleSup">17&#44;33&#8211;36</span></a><ul class="elsevierStyleList" id="lis0025"><li class="elsevierStyleListItem" id="lsti0145"><span class="elsevierStyleLabel">&#40;a&#41;</span><p id="par0220" class="elsevierStylePara elsevierViewall">Physical impact&#58; patients feel different&#44; above all because of their short stature and the effects of the disease and treatment&#46;</p></li><li class="elsevierStyleListItem" id="lsti0150"><span class="elsevierStyleLabel">&#40;b&#41;</span><p id="par0225" class="elsevierStylePara elsevierViewall">Psychologic impact&#58; on personal relationships and in terms of their autonomy and social life&#46; They are dependent on their family for care and the disease hinders their personal development&#46; Conflicting feelings of overprotection and gratitude to those around them&#46; Fear of rejection&#46; Frequent discrimination at school and in the workplace&#46; More depression and anxiety than in other chronic diseases&#46;<a class="elsevierStyleCrossRef" href="#bib0435"><span class="elsevierStyleSup">37</span></a></p></li><li class="elsevierStyleListItem" id="lsti0155"><span class="elsevierStyleLabel">&#40;c&#41;</span><p id="par0230" class="elsevierStylePara elsevierViewall">Development of positive strategies and attitudes&#58; adapting to the disease&#44; fostering a healthy lifestyle&#44; desire for personal growth and an appreciation of life&#46;</p></li></ul></p><p id="par0235" class="elsevierStylePara elsevierViewall"><a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a> summarizes the attitudes and perceptions of cystinosis patients and the T-CiS&#46;bcn group with regard to transition&#46;</p><elsevierMultimedia ident="fig0010"></elsevierMultimedia></span><span id="sec0055" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0115">What are the requirements for transition in cystinosis&#63;</span><span id="sec0060" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0120">Main agents</span><p id="par0240" class="elsevierStylePara elsevierViewall">In cystinosis&#44; as with other chronic RD&#44; the transition process requires the active and integrated involvement of different parties&#44; with the <span class="elsevierStyleItalic">patient</span> being both the main agent and the core around which the entire care process revolves&#46;<a class="elsevierStyleCrossRefs" href="#bib0370"><span class="elsevierStyleSup">24&#44;34</span></a> Given that the disease is progressive&#44; new transition agents become incorporated over time&#58; the hospital team&#44; the family&#44; patient associations&#44; the case manager and the adult care and primary care teams&#46;</p><p id="par0245" class="elsevierStylePara elsevierViewall">The transition team comprises the pediatric nephrology group&#44; adult nephrology&#8212;primarily the transplant team&#8212;and other non-nephrology specialists i&#46;e&#46; ophthalmologist&#44; endocrinologist&#44; neurologist&#44; gastroenterologist&#44; etc&#46; involved in the patient&#39;s care according to extra-renal involvement&#46; Likewise&#44; nursing professionals specialised in transition must also participate in the process along with dietitians&#44; psychologists&#44; social workers and pharmacy specialists&#46;</p><p id="par0250" class="elsevierStylePara elsevierViewall">The <span class="elsevierStyleItalic">case manager</span> constitutes one of the mainstays of transition&#46;<a class="elsevierStyleCrossRefs" href="#bib0295"><span class="elsevierStyleSup">9&#44;38</span></a> The role of this professional&#44; who is usually from a specialist nursing background &#40;transplants&#44; RD&#44; etc&#46;&#41;&#44; has been created to facilitate coordination among different specialities within the same hospital&#44; different hospitals and other levels of care&#46; The case manager acts as a link between the different healthcare specialists&#44; the patient and his&#47;her family to ensure appropriate treatment coordination and guided emotional support during the transition&#46; He&#47;she must form part of both the pediatric and adult care teams to optimize the multidisciplinary effort and guarantee the continuum of the patient&#39;s care and follow-up in an efficient and lively manner&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;24&#44;25</span></a></p><p id="par0255" class="elsevierStylePara elsevierViewall">Some successful transition experiences featured the participation of so-called &#8220;<span class="elsevierStyleItalic">transition leaders&#8221;</span>&#44; psychologists and&#47;or social workers&#44; and even young adult patients&#46; Their role is to establish links between the medical team and patients&#44; help them fit into the health care unit&#44; build their self-esteem and trust in the new care team and provide the necessary support to overcome the difficulties inherent in having a chronic disease at a difficult stage such as adolescence&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;8</span></a></p><p id="par0260" class="elsevierStylePara elsevierViewall">In addition to transitions between hospital teams at the same site or different connected hospitals&#44; it is imperative in RD such as cystinosis to construct a working network to ensure good communication between CE and the patient&#39;s local follow-up units&#46; As such&#44; activities will be overseen by the case manager from the CE&#44; thereby avoiding any unnecessary displacements of the patient and his&#47;her family&#46; This network approach will not only benefit the patient&#44; but also the healthcare system&#44; since the information shared will improve understanding of cystinosis across various levels of care and&#44; as a result&#44; improve the diagnosis and clinical follow-up of patients&#46;</p><p id="par0265" class="elsevierStylePara elsevierViewall">Although cystinosis patients are primarily cared for in a hospital setting&#44; by the time they reach adulthood&#44; <span class="elsevierStyleItalic">primary care</span> teams gradually take on their support&#44; enlisting them in chronic disease management programs with benefits pertaining to medical prescriptions&#44; home-based care&#44; healthcare transportation&#44; social welfare and disability support&#44; among others&#46;<a class="elsevierStyleCrossRef" href="#bib0445"><span class="elsevierStyleSup">39</span></a></p><p id="par0270" class="elsevierStylePara elsevierViewall">PA play a highly significant role in the care of RD patients&#44; and share a common objective<a class="elsevierStyleCrossRef" href="#bib0350"><span class="elsevierStyleSup">20</span></a> which is to pool opinions and ensure patient representation before health and government institutions and demand health care directed at the specific priority needs of cystinosis&#46; Moreover&#44; and no less importantly&#44; PA spring from the need for companionship&#44; support and closeness of families faced with the diagnosis and facilitating links to other patients and families by providing relevant information&#44; health-related education and&#44; to some extent&#44; promoting research on cystinosis&#46; There are various examples of how PA involvement benefits care regimens&#46;<a class="elsevierStyleCrossRef" href="#bib0440"><span class="elsevierStyleSup">38</span></a></p></span><span id="sec0065" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0125">Which physician should coordinate transitions in cystinosis&#63;</span><p id="par0275" class="elsevierStylePara elsevierViewall">Pediatric and adult nephrology departments should be in charge of planning&#44; organizing&#44; implementing and monitoring the transition and transfer of adolescents and young adults with cystinosis&#46;<a class="elsevierStyleCrossRefs" href="#bib0345"><span class="elsevierStyleSup">19&#44;40</span></a> The kidney is well known to be the first organ affected by cystinosis&#44; and this determines the morbidity and prognosis of the patient&#46; The majority of patients progress prematurely to end-stage renal disease &#40;ESRD&#41; while still in chilhood&#44;<a class="elsevierStyleCrossRefs" href="#bib0270"><span class="elsevierStyleSup">4&#44;16</span></a> due in part to the fact that treatment with cysteamine does not achieve full renal remission&#46;<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">4</span></a> It is very rare for any form of extra-renal involvement in cystinosis to produce greater morbidity than kidney damage&#46;<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;5&#44;6</span></a> For this reason&#44; the nephrologist should be responsible for coordinating the transition given that he&#47;she is in charge of the most severe disease during the process&#46;<a class="elsevierStyleCrossRefs" href="#bib0455"><span class="elsevierStyleSup">41&#44;42</span></a></p><p id="par0280" class="elsevierStylePara elsevierViewall">Over 80&#37; of cystinosis patients transferred to adult units have received a KTx&#44; so are usually referred to nephrologists caring for kidney transplant patients&#46;<a class="elsevierStyleCrossRefs" href="#bib0265"><span class="elsevierStyleSup">3&#44;35</span></a> A handful of patients will arrive at the adult unit on dialysis&#44; or might present symptoms of progressive CKD&#44; with therapeutic requirements typical of the disease&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a></p><p id="par0285" class="elsevierStylePara elsevierViewall">Adult nephrologists are not usually familiar with cystinosis&#44; which is understandable given the low prevalence of the disease&#46; Cystinosis represents approximately 0&#46;5&#37; of the causes of CKD&#44; and only a 0&#46;1&#37; of all patients over the age of 20 on renal replacement therapy&#46;<a class="elsevierStyleCrossRefs" href="#bib0270"><span class="elsevierStyleSup">4&#44;15</span></a> Thus&#44; adequate communication and a positive attitude between pediatric and adult units are fundamental when planning the transition&#46;</p></span><span id="sec0070" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0130">Transition plan or program in nephrology</span><p id="par0290" class="elsevierStylePara elsevierViewall">The success of the transition process lies in the generation and implementation of a transition plan that takes into account the following <span class="elsevierStyleItalic">key components</span><a class="elsevierStyleCrossRef" href="#bib0430"><span class="elsevierStyleSup">36</span></a>&#58;<ul class="elsevierStyleList" id="lis0030"><li class="elsevierStyleListItem" id="lsti0160"><span class="elsevierStyleLabel">-</span><p id="par0295" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Appropriate age&#58;</span> flexible&#44; based on the patient&#39;s health status&#44; personal&#47;physical development and degree of autonomy and whether the adult unit is ready to receive the patient&#46;</p></li><li class="elsevierStyleListItem" id="lsti0165"><span class="elsevierStyleLabel">-</span><p id="par0300" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Preparation period&#58;</span> designed to provide the patient with the necessary skills for self-care&#44; understanding of the disease and how to gradually become independent of their parents or carers&#46;</p></li><li class="elsevierStyleListItem" id="lsti0170"><span class="elsevierStyleLabel">-</span><p id="par0305" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Coordinated process&#58;</span> between the pediatric and adult teams&#46; Geared towards incorporating the patient in the adult follow-up program led by the key member&#58; the case manager&#46;</p></li><li class="elsevierStyleListItem" id="lsti0175"><span class="elsevierStyleLabel">-</span><p id="par0310" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Receiving hospital&#58;</span> the cystinosis patient must be monitored in a hospital setting with a kidney transplant follow-up program&#46;</p></li><li class="elsevierStyleListItem" id="lsti0180"><span class="elsevierStyleLabel">-</span><p id="par0315" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Reference adult nephrologist&#58;</span> with appropriate skills and interest in the disease&#44; able to provide the patient with an environment of trust&#46;</p></li><li class="elsevierStyleListItem" id="lsti0185"><span class="elsevierStyleLabel">-</span><p id="par0320" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Administrative structure&#58;</span> for managing the multidisciplinary follow-up&#46;</p></li><li class="elsevierStyleListItem" id="lsti0190"><span class="elsevierStyleLabel">-</span><p id="par0325" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Primary Care&#58;</span> to reinforce interactions between the different levels of care&#46;</p></li><li class="elsevierStyleListItem" id="lsti0195"><span class="elsevierStyleLabel">-</span><p id="par0330" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">In-process quality control program through</span> the different stages&#46;</p></li></ul></p></span></span><span id="sec0075" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0135">Suggested transition model</span><p id="par0335" class="elsevierStylePara elsevierViewall">The treatment of cystinosis patients is closely linked to highly specialised hospital care&#46; There is no single transition model and pediatric patients may be transferred from a variety of settings&#58;<ul class="elsevierStyleList" id="lis0035"><li class="elsevierStyleListItem" id="lsti0200"><span class="elsevierStyleLabel">1&#46;</span><p id="par0340" class="elsevierStylePara elsevierViewall">A children&#39;s hospital within a general hospital where the patient is not usually required to change site&#44; thus favoring the continuum of care&#46;</p></li><li class="elsevierStyleListItem" id="lsti0205"><span class="elsevierStyleLabel">2&#46;</span><p id="par0345" class="elsevierStylePara elsevierViewall">A children&#39;s hospital that must transfer its patients to another adult center&#46; However&#44; this center is usually within close proximity&#44; with established collaboration&#44; thereby facilitating interactions between the healthcare teams&#46;</p></li><li class="elsevierStyleListItem" id="lsti0210"><span class="elsevierStyleLabel">3&#46;</span><p id="par0350" class="elsevierStylePara elsevierViewall">A children&#39;s hospital which&#44; regardless of its nature&#44; transfers patients to another referral center in a geographical area far from the patient&#39;s place of residence&#46; This context poses the greatest difficulties&#44; thereby reinforcing the need for a set transition plan&#46;</p></li></ul></p><p id="par0355" class="elsevierStylePara elsevierViewall">The interests of the patient and their family and other personal factors will be assessed in all cases and at all times<ul class="elsevierStyleList" id="lis0040"><li class="elsevierStyleListItem" id="lsti0215"><span class="elsevierStyleLabel">&#40;a&#41;</span><p id="par0360" class="elsevierStylePara elsevierViewall">Circuit&#58;<ul class="elsevierStyleList" id="lis0045"><li class="elsevierStyleListItem" id="lsti0220"><span class="elsevierStyleLabel">&#40;1&#41;</span><p id="par0365" class="elsevierStylePara elsevierViewall">Advise the patient who is reaching <span class="elsevierStyleItalic">transition age</span> and <span class="elsevierStyleItalic">implement the protocol</span> on an individual basis &#40;follow-up visits with the case manager to reinforce the healthcare instruction&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0225"><span class="elsevierStyleLabel">&#40;2&#41;</span><p id="par0370" class="elsevierStylePara elsevierViewall">Apply selection criteria for the center of reference based on&#58; the patient&#39;s place of residence&#44; the patient&#39;s decision and the existence of a CE or nearby center of reference&#46;</p></li><li class="elsevierStyleListItem" id="lsti0230"><span class="elsevierStyleLabel">&#40;3&#41;</span><p id="par0375" class="elsevierStylePara elsevierViewall">Identify the most suitable adult nephrologist to receive the cystinosis patient according to the organization of the department and available resources&#46;</p></li><li class="elsevierStyleListItem" id="lsti0235"><span class="elsevierStyleLabel">&#40;4&#41;</span><p id="par0380" class="elsevierStylePara elsevierViewall">Establish communication between the case manager of the children&#39;s hospital and that of the receiving adult department&#46;</p></li><li class="elsevierStyleListItem" id="lsti0240"><span class="elsevierStyleLabel">&#40;5&#41;</span><p id="par0385" class="elsevierStylePara elsevierViewall">Draw up a specific transition plan from pediatric to adult nephrology&#46; This should be specifically designed for the patient and hospital in question&#44; and will include&#58;<ul class="elsevierStyleList" id="lis0050"><li class="elsevierStyleListItem" id="lsti0245"><span class="elsevierStyleLabel">-</span><p id="par0390" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Briefing &#40;face-to-face&#44; by telephone or</span> via <span class="elsevierStyleItalic">email&#41;</span> of the pediatric nephrologists&#44; case manager and adult nephrologist to establish contact between the teams and consolidate a lasting relationship&#46;</p></li><li class="elsevierStyleListItem" id="lsti0250"><span class="elsevierStyleLabel">-</span><p id="par0395" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Whenever possible&#44; try to hold a joint meeting of both teams</span> &#40;final or penultimate visit prior to the transfer&#41; to remove any barriers and facilitate the transition to external adult nephrology appointments&#46; Should geographic barriers exist&#44; foster a network approach&#46;</p></li></ul></p></li><li class="elsevierStyleListItem" id="lsti0255"><span class="elsevierStyleLabel">&#40;6&#41;</span><p id="par0400" class="elsevierStylePara elsevierViewall">Ensure that the pharmacy circuit adapts to the new circumstances and that the patient has enough of the specific medication required until admission to the receiving center&#46;</p></li><li class="elsevierStyleListItem" id="lsti0260"><span class="elsevierStyleLabel">&#40;7&#41;</span><p id="par0405" class="elsevierStylePara elsevierViewall">The actual transfer of the patient&#46;</p></li><li class="elsevierStyleListItem" id="lsti0265"><span class="elsevierStyleLabel">&#40;8&#41;</span><p id="par0410" class="elsevierStylePara elsevierViewall">Follow-up and monitoring of the transition to guarantee the continuum of care and detect any deviations from the protocol or unforeseen difficulties&#46; The duration of this period will be agreed upon by both teams&#59; it is recommended to last for the first year&#44; which is the most critical period&#44; or until a follow-up routine has been established at the adult center&#46;</p></li><li class="elsevierStyleListItem" id="lsti0270"><span class="elsevierStyleLabel">&#40;9&#41;</span><p id="par0415" class="elsevierStylePara elsevierViewall">Quality control of the transition model&#44; including a registry of transferred patients and periodic updates of the transition protocol&#46;</p></li></ul></p></li><li class="elsevierStyleListItem" id="lsti0275"><span class="elsevierStyleLabel">&#40;b&#41;</span><p id="par0420" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Essential documentation&#58; medical report</span> from the pediatric nephrologist and any other specialists involved in the patient&#39;s care&#46; This record must include the following information&#58;<ul class="elsevierStyleList" id="lis0055"><li class="elsevierStyleListItem" id="lsti0280"><span class="elsevierStyleLabel">-</span><p id="par0425" class="elsevierStylePara elsevierViewall">Clinical diagnosis &#40;age at diagnosis&#44; clinical characteristics&#44; genetic diagnosis&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0285"><span class="elsevierStyleLabel">-</span><p id="par0430" class="elsevierStylePara elsevierViewall">Relevant personal history &#40;including allergies and intolerances&#44; vaccination schedule&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0290"><span class="elsevierStyleLabel">-</span><p id="par0435" class="elsevierStylePara elsevierViewall">Patient&#39;s childhood clinical history &#40;on-going problems&#44; resolved problems&#44; serious renal and extra-renal complications&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0295"><span class="elsevierStyleLabel">-</span><p id="par0440" class="elsevierStylePara elsevierViewall">Pharmacologic treatment&#58; up-to-date treatment plan&#44; drug levels&#44; specific therapeutic monitoring &#40;intragranulocyte cystine levels&#41; and report on treatment adherence&#46;</p></li><li class="elsevierStyleListItem" id="lsti0300"><span class="elsevierStyleLabel">-</span><p id="par0445" class="elsevierStylePara elsevierViewall">Final visit summary and a copy of the latest tests performed&#46;</p></li><li class="elsevierStyleListItem" id="lsti0305"><span class="elsevierStyleLabel">-</span><p id="par0450" class="elsevierStylePara elsevierViewall">Recommendations for clinical follow-up per speciality<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&#58;<ul class="elsevierStyleList" id="lis0060"><li class="elsevierStyleListItem" id="lsti0310"><span class="elsevierStyleLabel">-</span><p id="par0455" class="elsevierStylePara elsevierViewall">Up-to-date speciality-based appointment schedule&#46;</p></li><li class="elsevierStyleListItem" id="lsti0315"><span class="elsevierStyleLabel">-</span><p id="par0460" class="elsevierStylePara elsevierViewall">Appointment letter with comprehensive information for the patient and family &#40;date and time of appointment&#44; physician&#44; contact details&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0320"><span class="elsevierStyleLabel">-</span><p id="par0465" class="elsevierStylePara elsevierViewall">Identification of the receiving specialist&#46;</p></li><li class="elsevierStyleListItem" id="lsti0325"><span class="elsevierStyleLabel">-</span><p id="par0470" class="elsevierStylePara elsevierViewall">Request for complementary tests for the next visit&#46;</p></li></ul></p></li></ul></p></li></ul></p></span><span id="sec0080" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0140">Transition recommendations in cystinosis</span><p id="par0475" class="elsevierStylePara elsevierViewall">The T-CiS&#46;bcn working group has proposed with the following transition recommendations for adolescents and young adults with cystinosis to complement those of the multidisciplinary follow-up recommendations for these patients in adult medicine&#44; as indicated in the first part of the consensus document on comprehensive cystinosis care&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a></p><p id="par0480" class="elsevierStylePara elsevierViewall">Specific plans are provided herein for the most prevalent diseases in the transition phase&#58; nephrologic&#44; ophthalmologic&#44; endocrinologic and neurologic &#40;<a class="elsevierStyleCrossRefs" href="#tbl0015">Tables 2&#8211;5</a>&#41;&#44; along with recommendations for improving treatment compliance &#40;<a class="elsevierStyleCrossRef" href="#tbl0035">Table 6</a>&#41; and promoting patient self-care &#40;<a class="elsevierStyleCrossRef" href="#tbl0040">Table 7</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0015"></elsevierMultimedia><elsevierMultimedia ident="tbl0020"></elsevierMultimedia><elsevierMultimedia ident="tbl0025"></elsevierMultimedia><elsevierMultimedia ident="tbl0030"></elsevierMultimedia><elsevierMultimedia ident="tbl0035"></elsevierMultimedia><elsevierMultimedia ident="tbl0040"></elsevierMultimedia></span><span id="sec0085" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0145">Recommendations for improving treatment adherence during transition</span><p id="par0485" class="elsevierStylePara elsevierViewall">Granulocyte cystine levels &#8804;1<span class="elsevierStyleHsp" style=""></span>nmol hemicystine&#47;mg protein indicate good adherence to oral cysteamine&#44; resulting in therapeutic efficacy&#46; The issue of non-adherence emerges during adolescence and is generally more pronounced during the transition to adult units&#44; affecting both treatment and clinical adherence &#40;missed clinic appointments and complementary tests&#41;&#46; Non-adherence to cysteamine is associated with worse prognosis and greater renal and extra-renal disease progression&#46;<a class="elsevierStyleCrossRefs" href="#bib0270"><span class="elsevierStyleSup">4&#44;19&#44;43</span></a> Nevertheless&#44; suboptimal treatment compliance is not restricted to cystinosis and has been observed in KTx and other chronic diseases&#46;<a class="elsevierStyleCrossRefs" href="#bib0335"><span class="elsevierStyleSup">17&#44;44</span></a></p><p id="par0490" class="elsevierStylePara elsevierViewall">Numerous converging risk factors that affect treatment adherence in cystinosis patients include a strict dosing regimen&#44; tolerance problems&#44; potential side effects and a complex multi-drug treatment plan&#46; Furthermore&#44; other equally important considerations not exclusive to cystinosis are&#58; limited knowledge of the disease&#44; lack of motivation&#44; inadequate transition to adult care and impact of the disease on quality of life&#46;<a class="elsevierStyleCrossRefs" href="#bib0290"><span class="elsevierStyleSup">8&#44;45</span></a> A further factor is that cystinosis patients often present neuropsychologic involvement and disabilities which&#44; when accompanied by neurocognitive immaturity&#44; may further affect the patient&#39;s ability to manage the chronic disease&#46;<a class="elsevierStyleCrossRef" href="#bib0455"><span class="elsevierStyleSup">41</span></a></p><p id="par0495" class="elsevierStylePara elsevierViewall">Assessing treatment adherence is essential in the patient&#39;s clinical follow-up&#44; compliance should be routinely included in their medical notes&#44; with an open and positive attitude that permits the correction of any prescription deviations&#46;<a class="elsevierStyleCrossRefs" href="#bib0480"><span class="elsevierStyleSup">46&#44;47</span></a> Thus&#44; it is recommended that the different professionals involved assess the patient&#39;s degree of adherence and actively intervene with measures for improvement<a class="elsevierStyleCrossRefs" href="#bib0450"><span class="elsevierStyleSup">40&#44;44&#8211;49</span></a> &#40;<a class="elsevierStyleCrossRef" href="#tbl0035">Table 6</a>&#41;&#46;</p></span><span id="sec0090" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0150">Conflicts of interest</span><p id="par0500" class="elsevierStylePara elsevierViewall">The authors declare that they have no conflicts of interests&#46;</p></span></span>"
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          "titulo" => "What are the barriers to transition in cystinosis&#63;"
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              "titulo" => "Which physician should coordinate transitions in cystinosis&#63;"
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              "titulo" => "Transition plan or program in nephrology"
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          "titulo" => "Recommendations for improving treatment adherence during transition"
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          "titulo" => "Conflicts of interest"
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    "fechaAceptado" => "2016-05-10"
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            1 => "Adolescent"
            2 => "Cystinosis"
            3 => "Kidney transplant"
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        "titulo" => "Abstract"
        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Introduction</span><p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Improved outcome and longer life expectancy in patients with cystinosis and the intrinsic complexity of the disease&#44; underline the need for a guided transition of patients from pediatric to adult care&#46; The process aims to guarantee the continuum of care and enable the empowerment of patients from guardian to self-care&#46;</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Methods</span><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Bibliography review&#44; expert opinion and anonymous surveys of patients&#44; relatives and patient advocacy groups&#46;</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Results</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">A new plan to support and coordinate the transition of cystinotic patients providing specific proposals for a variety of medical fields and improved treatment adherence&#46; Nephrologists play a key role in the transition since most cystinotic patients have severe chronic kidney disease and require kidney transplantation before adulthood&#46;</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Conclusion</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">We present a proposal providing recommendations and a chronogram to aid the transition of adolescents and young adults with cystinosis in our area&#46;</p></span>"
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        "resumen" => "<span id="abst0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Introducci&#243;n</span><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">El aumento de la supervivencia de los pacientes con cistinosis y la propia complejidad de la enfermedad explican la necesidad de implementar un proceso de transici&#243;n guiada desde la medicina pedi&#225;trica hasta la del adulto&#44; que permita garantizar el <span class="elsevierStyleItalic">continuum</span> asistencial y posibilite el empoderamiento del paciente desde el cuidado tutelado al autocuidado&#46;</p></span> <span id="abst0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">M&#233;todos</span><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">Revisi&#243;n bibliogr&#225;fica&#44; opini&#243;n de expertos&#44; encuestas an&#243;nimas a pacientes&#44; familiares y asociaciones&#46;</p></span> <span id="abst0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Resultados</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">Elaboraci&#243;n de un documento de transici&#243;n coordinada&#44; con propuestas concretas por especialidades y de mejora de la adherencia terap&#233;utica y del autocuidado del paciente&#46; El nefr&#243;logo desempe&#241;a un papel clave en la transici&#243;n en la cistinosis debido a la afectaci&#243;n renal que domina la patolog&#237;a y porque la mayor&#237;a de los pacientes han recibido un trasplante renal antes de la edad adulta&#46;</p></span> <span id="abst0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Conclusi&#243;n</span><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">Se presenta un documento que establece unas recomendaciones y un cronograma para guiar la transici&#243;n de los adolescentes y adultos j&#243;venes con cistinosis en nuestro &#225;mbito&#46;</p></span>"
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          "leyenda" => "<p id="spar0060" class="elsevierStyleSimplePara elsevierViewall">Adapted from Cooley et al&#46;<a class="elsevierStyleCrossRef" href="#bib0375"><span class="elsevierStyleSup">25</span></a></p>"
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                  <table border="0" frame="\n
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                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " rowspan="2" align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Stages</th><th class="td" title="table-head  " align="center" valign="top" scope="col">Preadolescent 12&#8211;15 years old&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col">Adolescent 16&#8211;18 years old&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col">Young adult 19&#8211;25 years old&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr><tr title="table-row"><th class="td-with-role" title="table-head ; entry_with_role_rowhead " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Planning&#47;introduction to the transition&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Patient education&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Transfer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top">Disease</td><td class="td" title="table-entry  " align="left" valign="top">Know what he&#47;she is suffering from and can briefly explain what cystinosis entails&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Be able to explain the disease in greater detail&#44; describing multi-systemic involvement&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Understand the disease in depth&#44; as well as his&#47;her potential&#44; multi-systemic involvement and complications&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Recognize the extent of individual involvement&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Recognize symptoms&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="3" align="left" valign="top">Medication</td><td class="td" title="table-entry  " align="left" valign="top">Know the names of drugs&#44; daily dose and schedule&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Understand drugs in depth&#58; indication&#44; preparation&#44; storage&#44; side effects&#44; risk of autonomy&#44; drug interactions and an introduction to pharmacy circuits&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Autonomy in the preparation and administration of medication&#44; with minimum supervision&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Participate in the preparation and administration of medication&#44; with the supervision of a carer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Autonomy in the preparation and administration of medication&#44; with the supervision of a carer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Autonomy in pharmacy circuits&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Understand the benefits of correct administration and the risks of non-adherence&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Understand the benefits of correct administration and the risks of non-adherence in depth&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Full responsibility for good treatment compliance&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Lifestyle habits and prevention&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Start to understand health lifestyle habits &#40;diet&#44; physical exercise&#41;&#44; high-risk behavior and sexuality&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Understand and implement healthy lifestyle habits&#46; Taught about high-risk behavior &#40;drugs and alcohol&#41;&#44; sexually-transmitted diseases and unwanted pregnancy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Fully understand and implement healthy lifestyle habits&#46; Lack of high-risk behavior&#44; knowledge of sexual and reproductive health&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top">Relationship with the care team</td><td class="td" title="table-entry  " align="left" valign="top">Know the reference pediatric care team&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Initiate contact with the adult team &#40;sessions&#44; workshops&#44; associations&#44; mentors&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Know the reference adult care team&#44; the different specialists and the different levels of care involved in the process &#40;social worker&#44; primary care&#44; etc&#46;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Start to get involved at medical appointments and initiating communications with the care team&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Proactive attitude towards the care team&#44; and able to express doubts and ask questions&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Autonomy in communications with the care team&nbsp;\t\t\t\t\t\t\n
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                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="3" align="left" valign="top"><span class="elsevierStyleBold">Contact</span></td><td class="td" title="table-entry  " align="left" valign="top">Hospital Kidney Transplant Clinic&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Optional&#58; according to the patient&#39;s clinical status&#44; consult nephrology or dialysis units&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Identify a suitable specialist to supervise follow-up&#46; Assess whether there is a reference nephrologist for hereditary and&#47;or rare kidney disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Referral criterion</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Age&#58; personalized criterion&#44; but preferably at 18 years of age&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Documentation for the receiving specialist</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Information about the disease</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Optional&#58; <span class="elsevierStyleItalic">recommendations for comprehensive cystinosis care from the T-CiS&#46;bcn group</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Patient&#39;s medical record</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
              ]
              "imagenFichero" => array:1 [
                0 => "xTab1349358.png"
              ]
            ]
            1 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " colspan="3" align="center" valign="top" scope="col"><span class="elsevierStyleBold">Detailed anamnesis</span></th></tr><tr title="table-row"><th class="td" title="table-head  " colspan="3" align="left" valign="top" scope="col"><span class="elsevierStyleVsp" style="height:0.5px"></span></th></tr><tr title="table-row"><th class="td" title="table-head  " colspan="3" align="center" valign="top" scope="col">Anthropometric data &#40;weight and height&#41;&#44; blood pressure</th></tr><tr title="table-row"><th class="td-with-role" title="table-head ; entry_with_role_rowhead " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Kidney transplant&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Chronic dialysis&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Chronic kidney disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Background</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Date&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Start date&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Stage of chronic kidney disease and rate of progression&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Type of transplant &#40;preventive or post-dialysis&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Type of dialysis &#40;hemodialysis or peritoneal dialysis&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Active status on the kidney transplant waiting list &#40;or not&#41; and why&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Donor characteristics &#40;alive or deceased&#44; HLA&#44; serologic tests&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Place of treatment &#40;hospital&#44; center&#44; home&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Patient characteristics &#40;HLA&#44; serologic tests&#44; other risks&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Receiver characteristics &#40;HLA&#44; serologic tests&#44; other risks&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Vascular access &#40;arteriovenous fistula&#44; catheter&#41;&#44; date and associated complications&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Quantified diuresis&#44; residual renal function and presence or absence of active Fanconi Syndrome&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Surgical report &#40;graft characteristics&#44; initial transplant evolution&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Active status on the kidney transplant waiting list &#40;or not&#41; and why Receiver characteristics &#40;HLA&#44; serologic tests&#44; other risks&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Graft biopsy &#40;protocol or elective&#44; date and findings&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Dialysis prescription and efficacy &#40;Kt&#47;V&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Anti-donor antibodies&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Quantified residual diuresis&#44; residual renal function and presence or absence of active Fanconi Syndrome&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Events</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Episodes of rejection&#44; acute renal failure&#44; hypertension&#44; cardiovascular involvement&#44; dyslipidemia&#44; diabetes&#44; bone disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Episodes of superimposed kidney failure&#44; hypertension&#44; cardiovascular involvement&#44; dyslipidemia&#44; diabetes&#44; bone disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Episodes of superimposed kidney failure&#44; hypertension&#44; cardiovascular involvement&#44; dyslipidemia&#44; diabetes&#44; bone disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Treatment plan</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Immunosuppression regimen&#58;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Secondary and therapeutic effects of the prescribed drugs&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Secondary and therapeutic effects of the prescribed drugs&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Initial&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Specific cysteamine therapy and intragranulocyte cystine levels&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Specific cysteamine therapy and intragranulocyte cystine levels&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Significant changes and causes&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Other treatments&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Other treatments&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Current&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Treatment adherence&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Treatment adherence&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Maintenance immunosuppressant levels&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Side effects of immunosuppressants and other associated drugs&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Specific cysteamine therapy and intragranulocyte cystine levels&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Other treatments&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Treatment adherence&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Additional investigations</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest blood test&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Kidney ultrasound scan&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Ocular fundus examination&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Ambulatory blood pressure monitoring&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Echocardiogram&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Extra-renal involvement of cystinosis</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Coordinated care with other specialists&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Psychosocial assessment</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Incapacity and disability&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Education&#47;labor autonomy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Family&#44; social and legal status&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Monitoring patient follow-up</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Apply the KDIGO guidelines &#40;<a class="elsevierStyleInterRef" id="intr0005" href="http://www.kdigo.org/">www&#46;kdigo&#46;org</a>&#41; or recommendations issued by scientific nephrology societies on the follow-up of kidney transplant&#44; dialysis and pre-dialysis patients with chronic kidney disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">4&#46; Monitoring adherence to the topical ophthalmic treatment&#44; systemic cysteamine therapy and other prescribed drugs</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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        "descripcion" => array:1 [
          "en" => "<p id="spar0065" class="elsevierStyleSimplePara elsevierViewall">Recommendations for the transition to adult nephrology</p>"
        ]
      ]
      4 => array:8 [
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        "etiqueta" => "Table 3"
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                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleBold">Contact</span></td><td class="td" title="table-entry  " align="left" valign="top">Cornea and Ocular Surface Unit of the Hospital Ophthalmology Department&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Identify a cornea specialist to supervise follow-up&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Referral criterion</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Age&#58; personalized criterion&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Documentation for the receiving specialist</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Information about the disease</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Optional&#58; <span class="elsevierStyleItalic">Recommendations for comprehensive cystinosis care from the T-CiS&#46;bcn group</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Patient&#39;s medical record</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Patient monitoring</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>In adolescence &#40;16&#8211;18&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Tests every 6 months&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>In adults&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Tests every year&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">4&#46; Recommendations for optimal periodic follow-up</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Slit lamp biomicroscopy</td><td class="td" title="table-entry  " align="left" valign="top">Assess the cornea and anterior segment<a class="elsevierStyleCrossRef" href="#tblfn0005"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">It is of interest to describe any corneal crystal distribution at each examination&#44; specifying whether they are only deposited at the periphery or if their distribution is diffuse&#44; and whether they are located in the epithelium&#44; stroma and&#47;or endothelium&#46; This information will allow for better follow-up in the future&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Measure intraocular pressure</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Examination of the ocular fundus under mydriasis</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">5&#46; Recommendations in exceptional circumstances</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Photopic and scotopic electroretinogram&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">If the patient mentions night vision problems or if the ocular fundus is altered&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Ocular fundus examination 2&#8211;3 months after starting treatment with certain drugs &#40;growth hormone&#44; oral contraceptives&#44; etc&#46;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">If the patient is undergoing treatment with drugs that have a reported association with benign idiopathic intracranial hypertension and if they present headaches&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Ophthalmologic emergency&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">If the patient mentions a severe and&#47;or acute loss of vision&#44; given that these symptoms are not typical of cystinosis&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">6&#46; Topical ophthalmic treatment</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a></td><td class="td" title="table-entry  " align="left" valign="top">Cysteamine saline solution 0&#46;55&#37;&#46; Cysteamine viscous solution 0&#46;55&#37;&#46; Up to 4 times a day&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">One drop 10&#8211;12 times a day&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">7&#46; Monitoring adherence to the topical ophthalmic treatment&#44; systemic cysteamine therapy and other prescribed drugs</span></td></tr></tbody></table>
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              "nota" => "<p class="elsevierStyleNotepara" id="npar0005">The presence of corneal cystine crystals is universal and is the main ocular target in cystinosis&#46;</p> <p class="elsevierStyleNotepara" id="npar0010">Taken from Ariceta et al&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a></p>"
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          "en" => "<p id="spar0070" class="elsevierStyleSimplePara elsevierViewall">Recommendations for the transition to adult ophthalmology</p>"
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          "leyenda" => "<p id="spar0085" class="elsevierStyleSimplePara elsevierViewall">BV&#58; baseline value prior to the treatment&#46;</p>"
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleBold">Contact</span></td><td class="td" title="table-entry  " align="left" valign="top">Endocrinology Department&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Identify a suitable specialist to supervise follow-up&#46; Assess whether there is a reference endocrinologist for hereditary and&#47;or rare diseases&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Referral criterion</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Age</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Personalized criterion&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Pubescent stage at transfer</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Tanner IV or below&#44; or a history of delayed puberty &#40;onset of puberty&#58; &#9794;<span class="elsevierStyleHsp" style=""></span>&#62;<span class="elsevierStyleHsp" style=""></span>14 years old&#59; &#9792;<span class="elsevierStyleHsp" style=""></span>&#62;<span class="elsevierStyleHsp" style=""></span>12 years old&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">If receiving treatment with&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Thyroxine&#44; insulin&#44; GH or testosterone&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Analytical abnormalitites in follow-up endocrine parameters</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&#58;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">T4L&#44; TSH&#44; glycemia&#44; HbA1c&#44; GH&#44; IGF-1&#44; testosterone&#44; LH&#44; FSH&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Gestational desire</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Documentation for the receiving specialist</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Information about the disease&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Optional&#58; <span class="elsevierStyleItalic">Recommendations for comprehensive cystinosis care from the T-CiS&#46;bcn group</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Patient&#39;s medical record</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;1&#46; Clinical data</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Staturo-ponderal development&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Weight&#44; height and weight&#47;height percentile at last visit &#40;ideally a scanned copy of the patient&#39;s height and weight chart&#41; and bone age&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Pubescent development&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Tanner maturity stage upon transfer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; If the patient presents diabetes&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Data relating to the study of chronic complications and other vascular risk factors&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;2&#46; Analytical data &#40;latest value&#47;date&#41;</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; T4L&#44; TSH</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Glycemia&#44; HbA1c</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; GH&#44; IGF-1</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; &#177;GH secretion test</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Testosterone&#44; LH&#44; FSH</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;3&#46; Hormone replacement therapy</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; &#40;BV&#47;BV date&#47;treatment start date&#47;preparation and dosage&#47;recent dosage changes&#47;functional tests&#41;</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Thyroxine</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Insulin</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; GH</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Testosterone</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Monitoring adherence to the topical ophthalmic treatment&#44; systemic cysteamine therapy and other prescribed drugs</span></td></tr></tbody></table>
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          "leyenda" => "<p id="spar0095" class="elsevierStyleSimplePara elsevierViewall">MRC&#58; Medical Research Council scale&#46;</p>"
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                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleBold">Contact</span></td><td class="td" title="table-entry  " align="left" valign="top">Neurology Department&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Identify a suitable specialist to supervise follow-up&#46; Assess whether there is a reference neurologist for hereditary and&#47;or rare diseases&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Referral criterion</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Age&#58; personalized criterion&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Documentation for the receiving specialist</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Information about the disease&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Optional&#58; <span class="elsevierStyleItalic">Recommendations for comprehensive cystinosis care from the T-CiS&#46;bcn group</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Patient&#39;s medical record</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Information regarding the presence of neurocognitive&#44; behavioral or school performance problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Almost 50&#37; of children under the age of 18 present alterations in their overall cognitive performance&#44; with repercussions on school performance&#46; Problems with&#58; attention&#44; executive functions&#44; language and memory have also been identified&#44; as well as with perceptive&#44; visuospatial and visuoconstructional functions and voluntary cognitive motor control&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest neuropsychologic explorations&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Assess overall cognitive performance and report the presence &#40;or absence&#41; of anxiety&#44; depression and behavioral alterations&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest muscular strength assessment</td><td class="td" title="table-entry  " align="left" valign="top">Manual MRC and quantitative determinations of hand muscle strength by means of validated dynamometers&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">In the event that distal myopathy is present&#44; its functional repercussion on the patient&#39;s daily activities will be provided&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest report on orofacial and deglutory motor function and respiratory function&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Report episodes of bronchoaspiration or recurrent pneumonia&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest neuroimaging tests</td><td class="td" title="table-entry  " align="left" valign="top">Report calcifications&#44; brain volume loss and other anomalies&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Quantify the degree of cerebral atrophy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Monitoring adherence to the topical ophthalmic treatment&#44; systemic cysteamine therapy and other prescribed drugs</span></td></tr></tbody></table>
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                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Therapeutic adherence assessment methods</span><a class="elsevierStyleCrossRefs" href="#bib0480"><span class="elsevierStyleSup">46&#44;47</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Direct methods</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>1&#46;1&#46; Monitoring of intragranulocyte cystine levels &#40;6<span class="elsevierStyleHsp" style=""></span>h post-Cystagon<span class="elsevierStyleSup">&#174;</span> dosing&#41;<a class="elsevierStyleCrossRefs" href="#bib0295"><span class="elsevierStyleSup">9&#44;12</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Good therapeutic control&#58; &#60;<span class="elsevierStyleBold">1</span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleBold">nmol &#189; cystine&#47;mg protein</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; In patients who do not receive treatment with cysteamine&#44; levels are usually<span class="elsevierStyleHsp" style=""></span>&#62;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleBold">1&#46;5</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; This method may be influenced by individual factors such as drug absorption&#44; extraction and sample shipment conditions<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>1&#46;2&#46; Assessment of corneal cystine deposits&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Detail any corneal crystal distribution at each slit lamp examination&#44; specifying whether they are only deposited at the periphery or if their distribution is diffuse&#44; and whether they are located in the epithelium&#44; stroma and&#47;or endothelium&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Indirect methods</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;1&#46; One-to-one interview with the patient &#40;always assess adherence during the appointment&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;2&#46; Adherence questionnaire&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;3&#46; Drug dispensing record of the Hospital Pharmacy Department&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;4&#46; Count the patient&#39;s leftover medication at each dispensation&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;5&#46; Use of electronic devices and specific computer applications to record administrations&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Measures for improving therapeutic adherence</span><a class="elsevierStyleCrossRefs" href="#bib0450"><span class="elsevierStyleSup"><span class="elsevierStyleBold">40&#8211;42&#44;44&#8211;49</span></span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Identify any risk factors affecting adherence and apply corrective measures whenever possible</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Socioeconomic and patient-related factors&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Disease-related factors&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Treatment-related factors&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Health organization barriers&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Promote the patient health education&#44; the treatment benefits and the consequences of non-adherence</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Foster the support of those close to the patient&#44; involving the family and patient associations</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">4&#46; Implement direct non-adherence detection measures</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">5&#46; Implement indirect non-adherence detection measures</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">6&#46; Implement direct treatment compliance support measures</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Agree on treatment plans with the patient and review these at each appointment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Inform the patient of potential side effects of the treatment and about interventions to alleviate them&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Simplify the treatment as much as possible&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Plan and adapt the medication to the patient&#39;s daily routine&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Provide written resources on the planned medication&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Implement measures to avoid forgotten doses&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Place the medication in a visible location&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Use digital alarms and reminders on mobile devices&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Use medicine dispensers or weekly blisters&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Have a spare dose at hand to cover forgotten doses &#40;wallet&#44; office&#44; car&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Arrange a pharmacotherapy and pharmaceutic care follow-up program&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">7&#46; Promote the continuum of care and schedule regular appointments&#46; Telephone follow-up for patients who do not comply with the appointment schedule</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">8&#46; Identify and appoint a &#8220;case manager&#47;coordinator&#8221; to manage the transition and advise the patient as appropriate</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">9&#46; Create a multidisciplinary medical team&#58; schedule regular Committee of Experts meetings for patient follow-up</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">10&#46; Implement multidisciplinary care programs that contemplate prevention&#44; detection and measures for improving therapeutic compliance</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">11&#46; Implement protocols for patient transition to adult care that ensure prevention&#44; detection and treatment compliance</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">12&#46; Foster a good relationship between the patient&#47;carer and medical team</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">13&#46; Implement protocol-based programs for the transition to adult care</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Planning the medical appointment&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check my schedule&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check my cystinosis medical kit and whether I need to renew my prescriptions&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check if I have any new documents from other specialists since my last medical visit&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Attend prearranged blood tests and check whether these include a cystine level determination &#40;remember to take Cystagon<span class="elsevierStyleSup">&#174;</span> 6<span class="elsevierStyleHsp" style=""></span>h prior to the blood draw&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check whether I am due any other complementary test prior to the medical visit&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Go to the pharmacy department to pick up the scheduled medication&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Before the medical appointment&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Write down any questions and&#47;or doubts you want to raise with the medical team&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make a note of any symptoms or health problems you have experienced since your last appointment &#40;since when&#44; how it passes&#44; what makes it worse&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make a note of your blood pressure and glucose tests if your doctor tells you to do so&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">During the appointment&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Do not be afraid to ask as many times as is necessary in order to clarify any doubts you may have&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make a note of any information you wish to remember&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Ask for your test results&#44; including your cystine levels and medical tests&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Ask the doctor or nurse to assess your results and how you are doing&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make sure you fully understand the instructions given to you by your doctor regarding changes to your treatment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check that you have your new treatment regimen in writing&#44; as well as up-to-date prescriptions&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Before the appointment ends&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check that you have written down the date of your next appointment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make sure you have the contact details of your medical team &#40;telephone and email&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Find out whether there have been any advances regarding your illness&#44; and whether there are any patient association meetings or conferences that may be of interest&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">When you get home&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check that you understand the treatment changes you were told about&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Prepare your weekly medical kit in accordance with your new treatment regimen&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Note down your next appointment in your diary&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>File any new documents&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make an appointment with your family doctor to explain the content of the visit and the changes made&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Cystinosis dossier&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Prepare a file in which you can save any documentation in an orderly manner&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Documents to include&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>1&#46; Medical visit schedule&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>2&#46; List of contacts&#58;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Hospital&#58; appointment line&#44; specialist physicians&#44; nursing team&#44; case manager&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Primary Care Center&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Patient Association&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Other useful telephone numbers&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>3&#46; Medical reports ordered by date and specialist&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>4&#46; Immunization card&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>5&#46; Record of allergies&#44; if any&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>6&#46; Any documents from appointments&#44; examinations and blood tests&#44; etc&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>7&#46; Prescription monitoring&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>8&#46; Medication monitoring&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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              "identificador" => "tblfn0010"
              "etiqueta" => "a"
              "nota" => "<p class="elsevierStyleNotepara" id="npar0015">Adapted from &#8220;Information prescription for patients with cystinosis&#8221; &#8211; Queen Elizabeth Hospital Birmingham&#44; with the authorization of Mr&#46; Steven Wise-Renal Metabolic Disease Nurse Specialist&#46;<a class="elsevierStyleCrossRef" href="#bib0500"><span class="elsevierStyleSup">50</span></a></p>"
            ]
          ]
        ]
        "descripcion" => array:1 [
          "en" => "<p id="spar0105" class="elsevierStyleSimplePara elsevierViewall">Recommendations for promoting self-care among adolescent and young adult patients &#91;adapted from ref&#46; <a class="elsevierStyleCrossRef" href="#bib0500"><span class="elsevierStyleSup">50</span></a>&#93;<a class="elsevierStyleCrossRef" href="#tblfn0010"><span class="elsevierStyleSup">a</span></a></p>"
        ]
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        "tipo" => "MULTIMEDIATABLA"
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">When&#63;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>The changeover should only take place after a transition period dedicated to preparing the adolescent&#47;young adult and receiving unit by providing the information required for treating the disease&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Planning&#58; to start the process in preadolescence &#40;12&#8211;14 years&#41;&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>At a time of clinical and emotional stability&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">How&#63;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Personalized for each patient&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Gradual&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Consensus with the patient and family&#44; and in agreement with the pediatric and adult healthcare teams&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>After completion of compulsory education&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Gradually provide the patient with information&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Involve the patient&#39;s family and close friends for support&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Introduce the patient to the new medical team prior to the changeover at an informal visit&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Process supervised by &#8220;transition leaders&#8221; from the pediatric and adult units&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Have a predefined transition plan&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Identify the case manager&#47;process coordinator&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Have the support of patient groups&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Take into account the treatment plans of the different medical specialities&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Provide the patient with support tools for self-management&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Take economic factors into account&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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    "bibliografia" => array:2 [
      "titulo" => "References"
      "seccion" => array:1 [
        0 => array:2 [
          "identificador" => "bibs0005"
          "bibliografiaReferencia" => array:50 [
            0 => array:3 [
              "identificador" => "bib0255"
              "etiqueta" => "1"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Cystinosis"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "W&#46;A&#46; Gahl"
                            1 => "J&#46;G&#46; Thoene"
                            2 => "J&#46;A&#46; Schneider"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1056/NEJMra020552"
                      "Revista" => array:6 [
                        "tituloSerie" => "New Engl J Med"
                        "fecha" => "2002"
                        "volumen" => "347"
                        "paginaInicial" => "111"
                        "paginaFinal" => "121"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/12110740"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            1 => array:3 [
              "identificador" => "bib0260"
              "etiqueta" => "2"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Cysteamine depletes cystinotic leucocyte granular fractions of cystine by the mechanism of disulphide interchange"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:4 [
                            0 => "W&#46;A&#46; Gahl"
                            1 => "F&#46; Tietze"
                            2 => "J&#46;D&#46; Butler"
                            3 => "J&#46;D&#46; Schulman"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:6 [
                        "tituloSerie" => "Biochem J"
                        "fecha" => "1985"
                        "volumen" => "228"
                        "paginaInicial" => "545"
                        "paginaFinal" => "550"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/4026796"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            2 => array:3 [
              "identificador" => "bib0265"
              "etiqueta" => "3"
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Special article
A coordinated transition model for patients with cystinosis: from pediatric to adult care
Transición coordinada del paciente con cistinosis desde la medicina pediátrica a la medicina del adulto
Gema Aricetaa,
Corresponding author
gariceta@vhebron.net

Corresponding author.
, Juan Antonio Camachob, Matilde Fernández-Obispoc, Aurora Fernández-Polod, Josep Gámeze, Judit García-Villoriaf, Enrique Larac, Pere Leyesg, Nieves Martín-Beguéh, Manel Perellói, Guillem Pintos-Morellj, Roser Torrak, J. Vicenç Torregrosal, Sandra Torres-Sierram, Anna Vila-Santandreub, Ana Güelln, Grupo T-CiS.bcn o
a Servicio de Nefrología Pediátrica, Hospital Universitari Vall d’Hebron, Grupo Renaltube, Redinren, Universidad Autónoma de Barcelona, Barcelona, Spain
b Servicio de Nefrología Pediátrica, Hospital San Joan de Déu, Barcelona, Spain
c Servicio de Nefrología Pediátrica, Hospital Universitari Vall d’Hebron, Barcelona, Spain
d Servicio de Farmacia, Hospital Universitari Vall d’Hebron, Barcelona, Spain
e Servicio de Neurología, Hospital Universitari Vall d’Hebron, Barcelona, Spain
f Servicio Bioquímica y Genética Molecular, Sección de Errores Congénitos del Metabolismo, Hospital Clínic, IDIBAPS y CIBERER, Barcelona, Spain
g Servicio de Endocrinología y Nutrición, Hospital Universitari Clínic, Barcelona, Spain
h Unidad de Oftalmología Pediátrica, Hospital Universitari Vall d’Hebron, Barcelona, Spain
i Servicio de Nefrología, Hospital Universitari Vall d’Hebron, Barcelona, Spain
j Unidad de Nefrología Pediátrica, Hospital Universitari Germans Trias i Pujol, Badalona, Barcelona, Spain
k Enfermedades Renales Hereditarias, Servicio de Nefrología, Fundació Puigvert, AIRG-E, Redinren, Universidad Autónoma de Barcelona, Barcelona, Spain
l Servicio de Nefrología y Trasplante Renal, Hospital Universitari Clínic, Barcelona, Spain
m Escuela Universitaria de Enfermería, Universidad Autónoma de Barcelona, Barcelona, Spain
n Product Affairs, Orphan Europe Grupo Recordati, Spain
o Working Group for Multidisciplinary Care and Transition from Paediatric to Adult Units in Cystinosis, Barcelona, Spain
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that alter cystinosin synthesis&#44; resulting in the accumulation of lysosomal cystine crystals in all body cells&#46;<a class="elsevierStyleCrossRefs" href="#bib0260"><span class="elsevierStyleSup">2&#44;9&#44;10</span></a> With an incidence of 1&#47;100&#44;000&#8211;200&#44;000 newborns&#44;<a class="elsevierStyleCrossRef" href="#bib0255"><span class="elsevierStyleSup">1</span></a> cystinosis is characterized by early renal involvement that evolves to kidney failure with corneal crystal deposits and other progressive extra-renal manifestations&#46;<a class="elsevierStyleCrossRef" href="#bib0305"><span class="elsevierStyleSup">11</span></a> Control of this disease requires a strict and complex therapeutic regimen<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;5&#44;6</span></a> together with rigorous periodic monitoring of cystine concentrations in granulocytes throughout the patient&#39;s life&#46;<a class="elsevierStyleCrossRefs" href="#bib0295"><span class="elsevierStyleSup">9&#44;11&#44;12</span></a></p><p id="par0015" class="elsevierStylePara elsevierViewall">Cystinosis use to be an exclusively pediatric disease and patients would die prematurely from kidney failure before the end of the first decade of life&#46;<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;4</span></a> The availability of specific treatment with cysteamine<a class="elsevierStyleCrossRefs" href="#bib0260"><span class="elsevierStyleSup">2&#44;13</span></a> and the success of pediatric kidney transplant &#40;KTx&#41; programs<a class="elsevierStyleCrossRefs" href="#bib0320"><span class="elsevierStyleSup">14&#44;15</span></a> now prolong patient survival to over 50 years&#46;<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">4</span></a> Consequently&#44; a growing number of adolescents and young adults with cystinosis are being admitted to adult units where the number of experts in this rare disease is extremely low&#46;<a class="elsevierStyleCrossRef" href="#bib0330"><span class="elsevierStyleSup">16</span></a> Furthermore&#44; since unexpected clinical worsening has been observed in many cases after these transfers&#44; it is a matter of concern that the clinical progress achieved in pediatric patients tends to decline in adulthood&#46; Numerous risk factors converge to explain this situation such as&#58; &#40;a&#41; the inherent difficulty in caring for an adolescent&#47;young adult with a chronic disease who has usually received a kidney transplant<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">5&#44;6</span></a> and thus has a high risk of graft loss<a class="elsevierStyleCrossRef" href="#bib0285"><span class="elsevierStyleSup">7</span></a>&#59; &#40;b&#41; the lack of experience and familiarity of adult patient especialists with this RD<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">4</span></a>&#59; &#40;c&#41; extra-renal involvement progression<a class="elsevierStyleCrossRef" href="#bib0330"><span class="elsevierStyleSup">16</span></a>&#59; &#40;d&#41; non-compliance with treatment&#44; which is common in this specific patient population&#44;<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">5&#44;17</span></a> and &#40;e&#41; the lack of experts close to the patient&#39;s place of residence&#46;<a class="elsevierStyleCrossRef" href="#bib0290"><span class="elsevierStyleSup">8</span></a> Thus&#44; various healthcare strategies for RD have been proposed including referrals to centers of expertise&#44; among others&#46;<a class="elsevierStyleCrossRefs" href="#bib0340"><span class="elsevierStyleSup">18&#44;19</span></a></p><p id="par0020" class="elsevierStylePara elsevierViewall">Cystinosis represents the paradigm of RD that requires a guided transition to adult medical care&#46; Owing to the specific characteristics of the disease<a class="elsevierStyleCrossRefs" href="#bib0265"><span class="elsevierStyleSup">3&#8211;5</span></a> patients face unique challenges during the transfer process to adult units&#44;<a class="elsevierStyleCrossRefs" href="#bib0280"><span class="elsevierStyleSup">6&#44;7&#44;20</span></a> which usually follows a generalized pattern&#46;<a class="elsevierStyleCrossRef" href="#bib0355"><span class="elsevierStyleSup">21</span></a> In Spain&#44; there are currently around 60 patients with cystinosis&#44; 30&#37; of whom are children&#44; 17&#37; adolescents and the rest are adults who&#44; in some cases&#44; continue to receive treatment in pediatric units&#46; Thus&#44; it is imperative to implement healthcare strategies to educate patients about their disease&#44; promote self-care and organization&#44; and support their transition to adult care&#46;<a class="elsevierStyleCrossRef" href="#bib0335"><span class="elsevierStyleSup">17</span></a> This proposal is intended as a useful tool for healthcare professionals to facilitate the planning of a coordinated transition for cystinosis patients in our healthcare setting&#46;</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Methodology</span><p id="par0025" class="elsevierStylePara elsevierViewall">This work is the result of different methodologic strategies implemented by the T-CiS&#46;bcn group&#58; &#40;1&#41; a literature search on PubMed using the following key words&#58; &#8220;cystinosis&#8221;&#44; &#8220;transition&#8221;&#44; &#8220;adolescent&#8221;&#44; &#8220;renal transplant&#8221; and &#8220;adherence&#8221;&#59; &#40;2&#41; a survey carried out on members of the T-CiS&#46;bcn group themselves to identify the needs and challenges of transition in the healthcare setting and favor the implementation of improvement strategies&#59; and &#40;3&#41; anonymous feedback from cystinosis patients and their relatives of the Spanish Cystinosis Group &#40;<a id="intr0015" class="elsevierStyleInterRef" href="http://www.grupocistinosis.org/">www&#46;grupocistinosis&#46;org</a>&#41;&#44; represented by the Spanish Association for Information and Research on Genetic Renal Disease &#40;AIRG-E&#59; <a id="intr0020" class="elsevierStyleInterRef" href="http://www.airg-e.org/">www&#46;airg-e&#46;org</a>&#41;&#46;</p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Theoretical framework&#58; healthcare strategies for rare diseases in the European Union</span><p id="par0030" class="elsevierStylePara elsevierViewall">The European Union defines a disease as rare when it affects no more than 5 in 10&#44;000 individuals&#46; There are approximately 8000 different RD&#44; affecting up to 8&#37; of the population&#46; The majority suffer from ultra-rare diseases&#44; i&#46;e&#46; those with a frequency of &#8804;1 in 100&#44;000&#44; which render these patients particularly vulnerable and isolated&#46;<a class="elsevierStyleCrossRef" href="#bib0355"><span class="elsevierStyleSup">21</span></a> The European Commission has defined and adopted several preventive&#44; diagnostic and treatment strategies for RD&#44; aimed at improving healthcare access and equity among affected patients and ultimately improving their quality of life&#46; The healthcare policies of each EU member state are based on the following Council Recommendations<a class="elsevierStyleCrossRef" href="#bib0360"><span class="elsevierStyleSup">22</span></a>&#58;<ul class="elsevierStyleList" id="lis0005"><li class="elsevierStyleListItem" id="lsti0005"><span class="elsevierStyleLabel">&#40;1&#41;</span><p id="par0035" class="elsevierStylePara elsevierViewall">Produce and adopt RD action plans and strategies based on the healthcare systems and social services of each country&#46;</p></li><li class="elsevierStyleListItem" id="lsti0010"><span class="elsevierStyleLabel">&#40;2&#41;</span><p id="par0040" class="elsevierStylePara elsevierViewall">Define&#44; encode and produce RD registers&#46;</p></li><li class="elsevierStyleListItem" id="lsti0015"><span class="elsevierStyleLabel">&#40;3&#41;</span><p id="par0045" class="elsevierStylePara elsevierViewall">Foster research on RD&#46;</p></li><li class="elsevierStyleListItem" id="lsti0020"><span class="elsevierStyleLabel">&#40;4&#41;</span><p id="par0050" class="elsevierStylePara elsevierViewall">Identify centers of expertise &#40;CE&#41;&#44; create European RD reference networks based on multidisciplinary healthcare&#44; and to divulgue knowledge&#46;</p></li><li class="elsevierStyleListItem" id="lsti0025"><span class="elsevierStyleLabel">&#40;5&#41;</span><p id="par0055" class="elsevierStylePara elsevierViewall">Centralize RD experience&#58; good clinical practise guidelines and training programs on the diagnosis and treatment of RD&#59; facilitate access to orphan drugs and clinico-therapeutic assessment reports&#46;</p></li><li class="elsevierStyleListItem" id="lsti0030"><span class="elsevierStyleLabel">&#40;6&#41;</span><p id="par0060" class="elsevierStylePara elsevierViewall">Promote the empowerment of patient associations &#40;PA&#41; through their involvement in developing healthcare policies and providing access to up-to-date information on RD&#46;</p></li><li class="elsevierStyleListItem" id="lsti0035"><span class="elsevierStyleLabel">&#40;7&#41;</span><p id="par0065" class="elsevierStylePara elsevierViewall">Ensure sustainability i&#46;e&#46; the long-term maintenance of information&#44; research and healthcare structures&#46;</p></li></ul></p><p id="par0070" class="elsevierStylePara elsevierViewall">In order to comply with recommendation N&#176;4&#44; the European Union Committee of Experts on Rare Diseases &#40;EUCERD&#41; defined the following criteria for the designation of a CE<a class="elsevierStyleCrossRef" href="#bib0355"><span class="elsevierStyleSup">21</span></a>&#58;<ul class="elsevierStyleList" id="lis0010"><li class="elsevierStyleListItem" id="lsti0040"><span class="elsevierStyleLabel">&#40;1&#41;</span><p id="par0075" class="elsevierStylePara elsevierViewall">Volume of relevant healthcare activity and capacity to offer quality services&#46;</p></li><li class="elsevierStyleListItem" id="lsti0045"><span class="elsevierStyleLabel">&#40;2&#41;</span><p id="par0080" class="elsevierStylePara elsevierViewall">Capacity to provide expert advice and clinical diagnoses&#44; and produce and implement clinical protocols and quality control&#46;</p></li><li class="elsevierStyleListItem" id="lsti0050"><span class="elsevierStyleLabel">&#40;3&#41;</span><p id="par0085" class="elsevierStylePara elsevierViewall">Multi-disciplinary healthcare&#46;</p></li><li class="elsevierStyleListItem" id="lsti0055"><span class="elsevierStyleLabel">&#40;4&#41;</span><p id="par0090" class="elsevierStylePara elsevierViewall">High level of expertise and experience documented through publications&#44; grants and training courses&#46;</p></li><li class="elsevierStyleListItem" id="lsti0060"><span class="elsevierStyleLabel">&#40;5&#41;</span><p id="par0095" class="elsevierStylePara elsevierViewall">Concerted contribution to research&#46;</p></li><li class="elsevierStyleListItem" id="lsti0065"><span class="elsevierStyleLabel">&#40;6&#41;</span><p id="par0100" class="elsevierStylePara elsevierViewall">Involvement in epidemiologic surveillance&#58; patient registries&#46;</p></li><li class="elsevierStyleListItem" id="lsti0070"><span class="elsevierStyleLabel">&#40;7&#41;</span><p id="par0105" class="elsevierStylePara elsevierViewall">Close links and collaboration with other centers of excellence&#46; Involvement in research networks&#46;</p></li><li class="elsevierStyleListItem" id="lsti0075"><span class="elsevierStyleLabel">&#40;8&#41;</span><p id="par0110" class="elsevierStylePara elsevierViewall">Capacity to interact with Patient Associations &#40;PA&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0080"><span class="elsevierStyleLabel">&#40;9&#41;</span><p id="par0115" class="elsevierStylePara elsevierViewall">Advisory service&#46;</p></li><li class="elsevierStyleListItem" id="lsti0085"><span class="elsevierStyleLabel">&#40;10&#41;</span><p id="par0120" class="elsevierStylePara elsevierViewall">Proven capacity for clinical patient follow-up&#46;</p></li></ul></p><p id="par0125" class="elsevierStylePara elsevierViewall">Spain approved the Rare Diseases Strategy of the National Health System in June 2009&#46;<a class="elsevierStyleCrossRef" href="#bib0365"><span class="elsevierStyleSup">23</span></a> Likewise&#44; the Spanish Federation for Rare Diseases &#40;FEDER&#59; <a id="intr0025" class="elsevierStyleInterRef" href="http://www.enfermedades-raras.org/">www&#46;enfermedades-raras&#46;org</a>&#41; acts on behalf of the 3 million individuals with rare diseases in Spain&#46;</p></span><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">What is transition&#63;</span><p id="par0130" class="elsevierStylePara elsevierViewall">Transition is a planned&#44; anticipated and coordinated process that aims to prepare and transfer the pediatric patient from guardian-care to an adult unit where they will become responsible for their own self-care&#46;<a class="elsevierStyleCrossRef" href="#bib0370"><span class="elsevierStyleSup">24</span></a> The transition phase will be gradual&#44; progressive and adapted to the patient&#39;s individual maturity&#44; which often fails to match the approved age at transfer&#46; This process must ensure that the patient receives adequate and continued care during the changeover&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;25</span></a></p><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Why is transition important&#63;</span><p id="par0135" class="elsevierStylePara elsevierViewall">The lack of organizational strategies in the transition phase has often led to unpredictable worsening of the patient&#39;s health&#46;<a class="elsevierStyleCrossRefs" href="#bib0370"><span class="elsevierStyleSup">24&#44;25</span></a> Historically&#44; very severe complications were observed in young patients with chronic diseases shortly after being transferred to adult units&#46;<a class="elsevierStyleCrossRef" href="#bib0380"><span class="elsevierStyleSup">26</span></a> This was especially evident in KTx cases&#44; with graft loss being particularly common&#46;<a class="elsevierStyleCrossRef" href="#bib0290"><span class="elsevierStyleSup">8</span></a> In fact&#44; adolescents and young adults who have received a KTx are known to be the group with the worst prognosis&#44;<a class="elsevierStyleCrossRef" href="#bib0385"><span class="elsevierStyleSup">27</span></a> and it is generally agreed that adolescents are incapable of undergoing the transition to adult care alone with guaranteed success&#46; When faced with the temptation to blame the patient for this situation&#44; it is important to consider that the healthcare system does not cater to the needs and specific characteristics of this population&#44;<a class="elsevierStyleCrossRef" href="#bib0380"><span class="elsevierStyleSup">26</span></a> where dissociation between the patient&#39;s chronological age and physical&#47;psychologic maturity is common &#40;development is not usually complete until the patient has reached 25 years of age&#41;&#46; Similarly&#44; many patients present some form of disability&#44; which impedes their full autonomy&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;28</span></a></p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0090">Characteristics of cystinosis</span><p id="par0140" class="elsevierStylePara elsevierViewall">In the case of adolescent cystinosis patients&#44; the transfer to adult specialists is even more difficult given the characteristics of the disease&#44; which is systemic and progressive&#46;<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;3</span></a> This explains the great impact it has on personal and physical development&#44;<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">5&#44;16&#44;19&#44;20</span></a> which is often associated with significant dependence and impairment&#46;<a class="elsevierStyleCrossRefs" href="#bib0265"><span class="elsevierStyleSup">3&#44;29&#8211;32</span></a> It should be emphasized that patients reach adult age because they have had personalized care and multidisciplinary attention during their childhood which must be continued into adulthood&#46;<a class="elsevierStyleCrossRef" href="#bib0335"><span class="elsevierStyleSup">17</span></a> The need for greater medical attention compared to other patients<a class="elsevierStyleCrossRefs" href="#bib0350"><span class="elsevierStyleSup">20&#44;25</span></a> explains why the transition of adolescents with cystinosis represents a major challenge not only for the patients themselves but also for their families and the health professionals involved in their care&#46;<a class="elsevierStyleCrossRefs" href="#bib0340"><span class="elsevierStyleSup">18&#44;19</span></a> The characteristics of adolescent cystinosis patients with chronic kidney disease &#40;CKD&#41; are described below<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;3&#44;5&#44;16&#44;29&#8211;33</span></a>&#58;<ul class="elsevierStyleList" id="lis0015"><li class="elsevierStyleListItem" id="lsti0090"><span class="elsevierStyleLabel">&#40;1&#41;</span><p id="par0145" class="elsevierStylePara elsevierViewall">Disharmonic pubertal delay&#58;<ul class="elsevierStyleList" id="lis0020"><li class="elsevierStyleListItem" id="lsti0095"><span class="elsevierStyleLabel">-</span><p id="par0150" class="elsevierStylePara elsevierViewall">Physical development delayed at least 2&#8211;3 years&#46;</p></li><li class="elsevierStyleListItem" id="lsti0100"><span class="elsevierStyleLabel">-</span><p id="par0155" class="elsevierStylePara elsevierViewall">Advanced emotional maturity for age in some areas &#40;skills acquired due to the illness&#41; and developmental delay in others&#46;</p></li><li class="elsevierStyleListItem" id="lsti0105"><span class="elsevierStyleLabel">-</span><p id="par0160" class="elsevierStylePara elsevierViewall">Incomplete brain development &#40;estimated to end at approximately 25 years of age&#41;&#46;</p></li></ul></p></li><li class="elsevierStyleListItem" id="lsti0110"><span class="elsevierStyleLabel">&#40;2&#41;</span><p id="par0165" class="elsevierStylePara elsevierViewall">Progressive and systemic disease involvement &#40;short stature&#44; joint deformities&#44; hypothyroidism&#44; diabetes mellitus&#44; infertility&#44; ocular involvement&#44; cognitive and central nervous system disorders&#44; distal myopathy&#44; cardiovascular involvement&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0115"><span class="elsevierStyleLabel">&#40;3&#41;</span><p id="par0170" class="elsevierStylePara elsevierViewall">High dependency on complex medical treatment and hospital care&#46;</p></li><li class="elsevierStyleListItem" id="lsti0120"><span class="elsevierStyleLabel">&#40;4&#41;</span><p id="par0175" class="elsevierStylePara elsevierViewall">Problems with treatment adherence&#58; polydrug use&#44; high number of doses&#44; adverse and transplant-specific effects&#46;</p></li><li class="elsevierStyleListItem" id="lsti0125"><span class="elsevierStyleLabel">&#40;5&#41;</span><p id="par0180" class="elsevierStylePara elsevierViewall">Difficulty in accepting that they are suffering from a lifelong illness&#44; with severe kidney disease and disability&#46; Active awareness-raising process&#46;</p></li><li class="elsevierStyleListItem" id="lsti0130"><span class="elsevierStyleLabel">&#40;6&#41;</span><p id="par0185" class="elsevierStylePara elsevierViewall">Feeling isolated and excluded from their peer group&#46;</p></li><li class="elsevierStyleListItem" id="lsti0135"><span class="elsevierStyleLabel">&#40;7&#41;</span><p id="par0190" class="elsevierStylePara elsevierViewall">Psychologic exhaustion due to the impact of the disease&#46;</p></li><li class="elsevierStyleListItem" id="lsti0140"><span class="elsevierStyleLabel">&#40;8&#41;</span><p id="par0195" class="elsevierStylePara elsevierViewall">Difficulties at school and in learning&#58; academic delay and problems in social relationships&#44; with bullying being common&#46;</p></li></ul></p></span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0095">When and how should the transition be carried out&#63;</span><p id="par0200" class="elsevierStylePara elsevierViewall">The transition process must be personalized and carried out in a gradual&#44; step-by-step manner&#46; The ideal time should be in keeping with the patient&#39;s individual maturity and their willingness to make the change<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;8&#44;20</span></a>&#58;<elsevierMultimedia ident="tbl0005"></elsevierMultimedia></p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0100">Transition plan&#58; stages and acquisition of competences</span><p id="par0205" class="elsevierStylePara elsevierViewall">The purpose of the transition plan is to oversee the patient&#39;s transfer following an established&#44; continuous&#44; uninterrupted therapeutic plan in an efficient and safe manner&#46; In general&#44; there are three chronologic stages&#58; preadolescence &#40;12&#8211;15 years&#41;&#44; adolescence &#40;16&#8211;18 years&#41; and young adulthood &#40;19&#8211;25 years&#41; which correspond to the following respective phases&#58; &#40;1&#41; creation and commencement of the transition plan&#59; &#40;2&#41; educating the patient on self-care and self-responsibility&#44; and &#40;3&#41; the transfer itself<a class="elsevierStyleCrossRef" href="#bib0375"><span class="elsevierStyleSup">25</span></a> &#40;<a class="elsevierStyleCrossRef" href="#tbl0010">Table 1</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0010"></elsevierMultimedia></span></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0105">What are the barriers to transition in cystinosis&#63;</span><p id="par0210" class="elsevierStylePara elsevierViewall">Identifying barriers is a fundamental step in recognising the patient&#39;s strengths and environment&#44; and in improving the coordination and commitment of all parties involved&#46; Child patients are seen by the pediatric nephrologist who focuses his&#47;her attention on systemic involvement&#46;<a class="elsevierStyleCrossRefs" href="#bib0275"><span class="elsevierStyleSup">5&#44;6&#44;18</span></a> This coordinated guardian care in pediatrics changes completely when the patient is transferred to adult care&#44; where they are often seen by separate professionals primarily focused on their own speciality&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a> The result is &#8220;fragmented care&#8221;&#44; with negative repercussions on healthcare quality and continuity&#46; This is seen by patients as a step backwards in terms of the care they are receiving and generates a loss of confidence in the medical team and resistance to change&#46;<a class="elsevierStyleCrossRef" href="#bib0340"><span class="elsevierStyleSup">18</span></a> This scenario is further exacerbated by the lack of resources set aside for RD&#46; The result of this situation is reflected in <a class="elsevierStyleCrossRef" href="#fig0005">Fig&#46; 1</a>&#44; which presents the barriers to transition in cystinosis&#44; some of which are also observed in many other RD&#46;</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0110">How is transition seen by each of the agents involved&#63;</span><p id="par0215" class="elsevierStylePara elsevierViewall">Through surveys conducted on patients and family members&#44; information has been obtained on the impact of the disease along with attitudes towards transition&#46;<a class="elsevierStyleCrossRefs" href="#bib0335"><span class="elsevierStyleSup">17&#44;33&#8211;36</span></a><ul class="elsevierStyleList" id="lis0025"><li class="elsevierStyleListItem" id="lsti0145"><span class="elsevierStyleLabel">&#40;a&#41;</span><p id="par0220" class="elsevierStylePara elsevierViewall">Physical impact&#58; patients feel different&#44; above all because of their short stature and the effects of the disease and treatment&#46;</p></li><li class="elsevierStyleListItem" id="lsti0150"><span class="elsevierStyleLabel">&#40;b&#41;</span><p id="par0225" class="elsevierStylePara elsevierViewall">Psychologic impact&#58; on personal relationships and in terms of their autonomy and social life&#46; They are dependent on their family for care and the disease hinders their personal development&#46; Conflicting feelings of overprotection and gratitude to those around them&#46; Fear of rejection&#46; Frequent discrimination at school and in the workplace&#46; More depression and anxiety than in other chronic diseases&#46;<a class="elsevierStyleCrossRef" href="#bib0435"><span class="elsevierStyleSup">37</span></a></p></li><li class="elsevierStyleListItem" id="lsti0155"><span class="elsevierStyleLabel">&#40;c&#41;</span><p id="par0230" class="elsevierStylePara elsevierViewall">Development of positive strategies and attitudes&#58; adapting to the disease&#44; fostering a healthy lifestyle&#44; desire for personal growth and an appreciation of life&#46;</p></li></ul></p><p id="par0235" class="elsevierStylePara elsevierViewall"><a class="elsevierStyleCrossRef" href="#fig0010">Fig&#46; 2</a> summarizes the attitudes and perceptions of cystinosis patients and the T-CiS&#46;bcn group with regard to transition&#46;</p><elsevierMultimedia ident="fig0010"></elsevierMultimedia></span><span id="sec0055" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0115">What are the requirements for transition in cystinosis&#63;</span><span id="sec0060" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0120">Main agents</span><p id="par0240" class="elsevierStylePara elsevierViewall">In cystinosis&#44; as with other chronic RD&#44; the transition process requires the active and integrated involvement of different parties&#44; with the <span class="elsevierStyleItalic">patient</span> being both the main agent and the core around which the entire care process revolves&#46;<a class="elsevierStyleCrossRefs" href="#bib0370"><span class="elsevierStyleSup">24&#44;34</span></a> Given that the disease is progressive&#44; new transition agents become incorporated over time&#58; the hospital team&#44; the family&#44; patient associations&#44; the case manager and the adult care and primary care teams&#46;</p><p id="par0245" class="elsevierStylePara elsevierViewall">The transition team comprises the pediatric nephrology group&#44; adult nephrology&#8212;primarily the transplant team&#8212;and other non-nephrology specialists i&#46;e&#46; ophthalmologist&#44; endocrinologist&#44; neurologist&#44; gastroenterologist&#44; etc&#46; involved in the patient&#39;s care according to extra-renal involvement&#46; Likewise&#44; nursing professionals specialised in transition must also participate in the process along with dietitians&#44; psychologists&#44; social workers and pharmacy specialists&#46;</p><p id="par0250" class="elsevierStylePara elsevierViewall">The <span class="elsevierStyleItalic">case manager</span> constitutes one of the mainstays of transition&#46;<a class="elsevierStyleCrossRefs" href="#bib0295"><span class="elsevierStyleSup">9&#44;38</span></a> The role of this professional&#44; who is usually from a specialist nursing background &#40;transplants&#44; RD&#44; etc&#46;&#41;&#44; has been created to facilitate coordination among different specialities within the same hospital&#44; different hospitals and other levels of care&#46; The case manager acts as a link between the different healthcare specialists&#44; the patient and his&#47;her family to ensure appropriate treatment coordination and guided emotional support during the transition&#46; He&#47;she must form part of both the pediatric and adult care teams to optimize the multidisciplinary effort and guarantee the continuum of the patient&#39;s care and follow-up in an efficient and lively manner&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;24&#44;25</span></a></p><p id="par0255" class="elsevierStylePara elsevierViewall">Some successful transition experiences featured the participation of so-called &#8220;<span class="elsevierStyleItalic">transition leaders&#8221;</span>&#44; psychologists and&#47;or social workers&#44; and even young adult patients&#46; Their role is to establish links between the medical team and patients&#44; help them fit into the health care unit&#44; build their self-esteem and trust in the new care team and provide the necessary support to overcome the difficulties inherent in having a chronic disease at a difficult stage such as adolescence&#46;<a class="elsevierStyleCrossRefs" href="#bib0285"><span class="elsevierStyleSup">7&#44;8</span></a></p><p id="par0260" class="elsevierStylePara elsevierViewall">In addition to transitions between hospital teams at the same site or different connected hospitals&#44; it is imperative in RD such as cystinosis to construct a working network to ensure good communication between CE and the patient&#39;s local follow-up units&#46; As such&#44; activities will be overseen by the case manager from the CE&#44; thereby avoiding any unnecessary displacements of the patient and his&#47;her family&#46; This network approach will not only benefit the patient&#44; but also the healthcare system&#44; since the information shared will improve understanding of cystinosis across various levels of care and&#44; as a result&#44; improve the diagnosis and clinical follow-up of patients&#46;</p><p id="par0265" class="elsevierStylePara elsevierViewall">Although cystinosis patients are primarily cared for in a hospital setting&#44; by the time they reach adulthood&#44; <span class="elsevierStyleItalic">primary care</span> teams gradually take on their support&#44; enlisting them in chronic disease management programs with benefits pertaining to medical prescriptions&#44; home-based care&#44; healthcare transportation&#44; social welfare and disability support&#44; among others&#46;<a class="elsevierStyleCrossRef" href="#bib0445"><span class="elsevierStyleSup">39</span></a></p><p id="par0270" class="elsevierStylePara elsevierViewall">PA play a highly significant role in the care of RD patients&#44; and share a common objective<a class="elsevierStyleCrossRef" href="#bib0350"><span class="elsevierStyleSup">20</span></a> which is to pool opinions and ensure patient representation before health and government institutions and demand health care directed at the specific priority needs of cystinosis&#46; Moreover&#44; and no less importantly&#44; PA spring from the need for companionship&#44; support and closeness of families faced with the diagnosis and facilitating links to other patients and families by providing relevant information&#44; health-related education and&#44; to some extent&#44; promoting research on cystinosis&#46; There are various examples of how PA involvement benefits care regimens&#46;<a class="elsevierStyleCrossRef" href="#bib0440"><span class="elsevierStyleSup">38</span></a></p></span><span id="sec0065" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0125">Which physician should coordinate transitions in cystinosis&#63;</span><p id="par0275" class="elsevierStylePara elsevierViewall">Pediatric and adult nephrology departments should be in charge of planning&#44; organizing&#44; implementing and monitoring the transition and transfer of adolescents and young adults with cystinosis&#46;<a class="elsevierStyleCrossRefs" href="#bib0345"><span class="elsevierStyleSup">19&#44;40</span></a> The kidney is well known to be the first organ affected by cystinosis&#44; and this determines the morbidity and prognosis of the patient&#46; The majority of patients progress prematurely to end-stage renal disease &#40;ESRD&#41; while still in chilhood&#44;<a class="elsevierStyleCrossRefs" href="#bib0270"><span class="elsevierStyleSup">4&#44;16</span></a> due in part to the fact that treatment with cysteamine does not achieve full renal remission&#46;<a class="elsevierStyleCrossRef" href="#bib0270"><span class="elsevierStyleSup">4</span></a> It is very rare for any form of extra-renal involvement in cystinosis to produce greater morbidity than kidney damage&#46;<a class="elsevierStyleCrossRefs" href="#bib0255"><span class="elsevierStyleSup">1&#44;5&#44;6</span></a> For this reason&#44; the nephrologist should be responsible for coordinating the transition given that he&#47;she is in charge of the most severe disease during the process&#46;<a class="elsevierStyleCrossRefs" href="#bib0455"><span class="elsevierStyleSup">41&#44;42</span></a></p><p id="par0280" class="elsevierStylePara elsevierViewall">Over 80&#37; of cystinosis patients transferred to adult units have received a KTx&#44; so are usually referred to nephrologists caring for kidney transplant patients&#46;<a class="elsevierStyleCrossRefs" href="#bib0265"><span class="elsevierStyleSup">3&#44;35</span></a> A handful of patients will arrive at the adult unit on dialysis&#44; or might present symptoms of progressive CKD&#44; with therapeutic requirements typical of the disease&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a></p><p id="par0285" class="elsevierStylePara elsevierViewall">Adult nephrologists are not usually familiar with cystinosis&#44; which is understandable given the low prevalence of the disease&#46; Cystinosis represents approximately 0&#46;5&#37; of the causes of CKD&#44; and only a 0&#46;1&#37; of all patients over the age of 20 on renal replacement therapy&#46;<a class="elsevierStyleCrossRefs" href="#bib0270"><span class="elsevierStyleSup">4&#44;15</span></a> Thus&#44; adequate communication and a positive attitude between pediatric and adult units are fundamental when planning the transition&#46;</p></span><span id="sec0070" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0130">Transition plan or program in nephrology</span><p id="par0290" class="elsevierStylePara elsevierViewall">The success of the transition process lies in the generation and implementation of a transition plan that takes into account the following <span class="elsevierStyleItalic">key components</span><a class="elsevierStyleCrossRef" href="#bib0430"><span class="elsevierStyleSup">36</span></a>&#58;<ul class="elsevierStyleList" id="lis0030"><li class="elsevierStyleListItem" id="lsti0160"><span class="elsevierStyleLabel">-</span><p id="par0295" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Appropriate age&#58;</span> flexible&#44; based on the patient&#39;s health status&#44; personal&#47;physical development and degree of autonomy and whether the adult unit is ready to receive the patient&#46;</p></li><li class="elsevierStyleListItem" id="lsti0165"><span class="elsevierStyleLabel">-</span><p id="par0300" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Preparation period&#58;</span> designed to provide the patient with the necessary skills for self-care&#44; understanding of the disease and how to gradually become independent of their parents or carers&#46;</p></li><li class="elsevierStyleListItem" id="lsti0170"><span class="elsevierStyleLabel">-</span><p id="par0305" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Coordinated process&#58;</span> between the pediatric and adult teams&#46; Geared towards incorporating the patient in the adult follow-up program led by the key member&#58; the case manager&#46;</p></li><li class="elsevierStyleListItem" id="lsti0175"><span class="elsevierStyleLabel">-</span><p id="par0310" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Receiving hospital&#58;</span> the cystinosis patient must be monitored in a hospital setting with a kidney transplant follow-up program&#46;</p></li><li class="elsevierStyleListItem" id="lsti0180"><span class="elsevierStyleLabel">-</span><p id="par0315" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Reference adult nephrologist&#58;</span> with appropriate skills and interest in the disease&#44; able to provide the patient with an environment of trust&#46;</p></li><li class="elsevierStyleListItem" id="lsti0185"><span class="elsevierStyleLabel">-</span><p id="par0320" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Administrative structure&#58;</span> for managing the multidisciplinary follow-up&#46;</p></li><li class="elsevierStyleListItem" id="lsti0190"><span class="elsevierStyleLabel">-</span><p id="par0325" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Primary Care&#58;</span> to reinforce interactions between the different levels of care&#46;</p></li><li class="elsevierStyleListItem" id="lsti0195"><span class="elsevierStyleLabel">-</span><p id="par0330" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">In-process quality control program through</span> the different stages&#46;</p></li></ul></p></span></span><span id="sec0075" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0135">Suggested transition model</span><p id="par0335" class="elsevierStylePara elsevierViewall">The treatment of cystinosis patients is closely linked to highly specialised hospital care&#46; There is no single transition model and pediatric patients may be transferred from a variety of settings&#58;<ul class="elsevierStyleList" id="lis0035"><li class="elsevierStyleListItem" id="lsti0200"><span class="elsevierStyleLabel">1&#46;</span><p id="par0340" class="elsevierStylePara elsevierViewall">A children&#39;s hospital within a general hospital where the patient is not usually required to change site&#44; thus favoring the continuum of care&#46;</p></li><li class="elsevierStyleListItem" id="lsti0205"><span class="elsevierStyleLabel">2&#46;</span><p id="par0345" class="elsevierStylePara elsevierViewall">A children&#39;s hospital that must transfer its patients to another adult center&#46; However&#44; this center is usually within close proximity&#44; with established collaboration&#44; thereby facilitating interactions between the healthcare teams&#46;</p></li><li class="elsevierStyleListItem" id="lsti0210"><span class="elsevierStyleLabel">3&#46;</span><p id="par0350" class="elsevierStylePara elsevierViewall">A children&#39;s hospital which&#44; regardless of its nature&#44; transfers patients to another referral center in a geographical area far from the patient&#39;s place of residence&#46; This context poses the greatest difficulties&#44; thereby reinforcing the need for a set transition plan&#46;</p></li></ul></p><p id="par0355" class="elsevierStylePara elsevierViewall">The interests of the patient and their family and other personal factors will be assessed in all cases and at all times<ul class="elsevierStyleList" id="lis0040"><li class="elsevierStyleListItem" id="lsti0215"><span class="elsevierStyleLabel">&#40;a&#41;</span><p id="par0360" class="elsevierStylePara elsevierViewall">Circuit&#58;<ul class="elsevierStyleList" id="lis0045"><li class="elsevierStyleListItem" id="lsti0220"><span class="elsevierStyleLabel">&#40;1&#41;</span><p id="par0365" class="elsevierStylePara elsevierViewall">Advise the patient who is reaching <span class="elsevierStyleItalic">transition age</span> and <span class="elsevierStyleItalic">implement the protocol</span> on an individual basis &#40;follow-up visits with the case manager to reinforce the healthcare instruction&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0225"><span class="elsevierStyleLabel">&#40;2&#41;</span><p id="par0370" class="elsevierStylePara elsevierViewall">Apply selection criteria for the center of reference based on&#58; the patient&#39;s place of residence&#44; the patient&#39;s decision and the existence of a CE or nearby center of reference&#46;</p></li><li class="elsevierStyleListItem" id="lsti0230"><span class="elsevierStyleLabel">&#40;3&#41;</span><p id="par0375" class="elsevierStylePara elsevierViewall">Identify the most suitable adult nephrologist to receive the cystinosis patient according to the organization of the department and available resources&#46;</p></li><li class="elsevierStyleListItem" id="lsti0235"><span class="elsevierStyleLabel">&#40;4&#41;</span><p id="par0380" class="elsevierStylePara elsevierViewall">Establish communication between the case manager of the children&#39;s hospital and that of the receiving adult department&#46;</p></li><li class="elsevierStyleListItem" id="lsti0240"><span class="elsevierStyleLabel">&#40;5&#41;</span><p id="par0385" class="elsevierStylePara elsevierViewall">Draw up a specific transition plan from pediatric to adult nephrology&#46; This should be specifically designed for the patient and hospital in question&#44; and will include&#58;<ul class="elsevierStyleList" id="lis0050"><li class="elsevierStyleListItem" id="lsti0245"><span class="elsevierStyleLabel">-</span><p id="par0390" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Briefing &#40;face-to-face&#44; by telephone or</span> via <span class="elsevierStyleItalic">email&#41;</span> of the pediatric nephrologists&#44; case manager and adult nephrologist to establish contact between the teams and consolidate a lasting relationship&#46;</p></li><li class="elsevierStyleListItem" id="lsti0250"><span class="elsevierStyleLabel">-</span><p id="par0395" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Whenever possible&#44; try to hold a joint meeting of both teams</span> &#40;final or penultimate visit prior to the transfer&#41; to remove any barriers and facilitate the transition to external adult nephrology appointments&#46; Should geographic barriers exist&#44; foster a network approach&#46;</p></li></ul></p></li><li class="elsevierStyleListItem" id="lsti0255"><span class="elsevierStyleLabel">&#40;6&#41;</span><p id="par0400" class="elsevierStylePara elsevierViewall">Ensure that the pharmacy circuit adapts to the new circumstances and that the patient has enough of the specific medication required until admission to the receiving center&#46;</p></li><li class="elsevierStyleListItem" id="lsti0260"><span class="elsevierStyleLabel">&#40;7&#41;</span><p id="par0405" class="elsevierStylePara elsevierViewall">The actual transfer of the patient&#46;</p></li><li class="elsevierStyleListItem" id="lsti0265"><span class="elsevierStyleLabel">&#40;8&#41;</span><p id="par0410" class="elsevierStylePara elsevierViewall">Follow-up and monitoring of the transition to guarantee the continuum of care and detect any deviations from the protocol or unforeseen difficulties&#46; The duration of this period will be agreed upon by both teams&#59; it is recommended to last for the first year&#44; which is the most critical period&#44; or until a follow-up routine has been established at the adult center&#46;</p></li><li class="elsevierStyleListItem" id="lsti0270"><span class="elsevierStyleLabel">&#40;9&#41;</span><p id="par0415" class="elsevierStylePara elsevierViewall">Quality control of the transition model&#44; including a registry of transferred patients and periodic updates of the transition protocol&#46;</p></li></ul></p></li><li class="elsevierStyleListItem" id="lsti0275"><span class="elsevierStyleLabel">&#40;b&#41;</span><p id="par0420" class="elsevierStylePara elsevierViewall"><span class="elsevierStyleItalic">Essential documentation&#58; medical report</span> from the pediatric nephrologist and any other specialists involved in the patient&#39;s care&#46; This record must include the following information&#58;<ul class="elsevierStyleList" id="lis0055"><li class="elsevierStyleListItem" id="lsti0280"><span class="elsevierStyleLabel">-</span><p id="par0425" class="elsevierStylePara elsevierViewall">Clinical diagnosis &#40;age at diagnosis&#44; clinical characteristics&#44; genetic diagnosis&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0285"><span class="elsevierStyleLabel">-</span><p id="par0430" class="elsevierStylePara elsevierViewall">Relevant personal history &#40;including allergies and intolerances&#44; vaccination schedule&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0290"><span class="elsevierStyleLabel">-</span><p id="par0435" class="elsevierStylePara elsevierViewall">Patient&#39;s childhood clinical history &#40;on-going problems&#44; resolved problems&#44; serious renal and extra-renal complications&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0295"><span class="elsevierStyleLabel">-</span><p id="par0440" class="elsevierStylePara elsevierViewall">Pharmacologic treatment&#58; up-to-date treatment plan&#44; drug levels&#44; specific therapeutic monitoring &#40;intragranulocyte cystine levels&#41; and report on treatment adherence&#46;</p></li><li class="elsevierStyleListItem" id="lsti0300"><span class="elsevierStyleLabel">-</span><p id="par0445" class="elsevierStylePara elsevierViewall">Final visit summary and a copy of the latest tests performed&#46;</p></li><li class="elsevierStyleListItem" id="lsti0305"><span class="elsevierStyleLabel">-</span><p id="par0450" class="elsevierStylePara elsevierViewall">Recommendations for clinical follow-up per speciality<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&#58;<ul class="elsevierStyleList" id="lis0060"><li class="elsevierStyleListItem" id="lsti0310"><span class="elsevierStyleLabel">-</span><p id="par0455" class="elsevierStylePara elsevierViewall">Up-to-date speciality-based appointment schedule&#46;</p></li><li class="elsevierStyleListItem" id="lsti0315"><span class="elsevierStyleLabel">-</span><p id="par0460" class="elsevierStylePara elsevierViewall">Appointment letter with comprehensive information for the patient and family &#40;date and time of appointment&#44; physician&#44; contact details&#41;&#46;</p></li><li class="elsevierStyleListItem" id="lsti0320"><span class="elsevierStyleLabel">-</span><p id="par0465" class="elsevierStylePara elsevierViewall">Identification of the receiving specialist&#46;</p></li><li class="elsevierStyleListItem" id="lsti0325"><span class="elsevierStyleLabel">-</span><p id="par0470" class="elsevierStylePara elsevierViewall">Request for complementary tests for the next visit&#46;</p></li></ul></p></li></ul></p></li></ul></p></span><span id="sec0080" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0140">Transition recommendations in cystinosis</span><p id="par0475" class="elsevierStylePara elsevierViewall">The T-CiS&#46;bcn working group has proposed with the following transition recommendations for adolescents and young adults with cystinosis to complement those of the multidisciplinary follow-up recommendations for these patients in adult medicine&#44; as indicated in the first part of the consensus document on comprehensive cystinosis care&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a></p><p id="par0480" class="elsevierStylePara elsevierViewall">Specific plans are provided herein for the most prevalent diseases in the transition phase&#58; nephrologic&#44; ophthalmologic&#44; endocrinologic and neurologic &#40;<a class="elsevierStyleCrossRefs" href="#tbl0015">Tables 2&#8211;5</a>&#41;&#44; along with recommendations for improving treatment compliance &#40;<a class="elsevierStyleCrossRef" href="#tbl0035">Table 6</a>&#41; and promoting patient self-care &#40;<a class="elsevierStyleCrossRef" href="#tbl0040">Table 7</a>&#41;&#46;</p><elsevierMultimedia ident="tbl0015"></elsevierMultimedia><elsevierMultimedia ident="tbl0020"></elsevierMultimedia><elsevierMultimedia ident="tbl0025"></elsevierMultimedia><elsevierMultimedia ident="tbl0030"></elsevierMultimedia><elsevierMultimedia ident="tbl0035"></elsevierMultimedia><elsevierMultimedia ident="tbl0040"></elsevierMultimedia></span><span id="sec0085" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0145">Recommendations for improving treatment adherence during transition</span><p id="par0485" class="elsevierStylePara elsevierViewall">Granulocyte cystine levels &#8804;1<span class="elsevierStyleHsp" style=""></span>nmol hemicystine&#47;mg protein indicate good adherence to oral cysteamine&#44; resulting in therapeutic efficacy&#46; The issue of non-adherence emerges during adolescence and is generally more pronounced during the transition to adult units&#44; affecting both treatment and clinical adherence &#40;missed clinic appointments and complementary tests&#41;&#46; Non-adherence to cysteamine is associated with worse prognosis and greater renal and extra-renal disease progression&#46;<a class="elsevierStyleCrossRefs" href="#bib0270"><span class="elsevierStyleSup">4&#44;19&#44;43</span></a> Nevertheless&#44; suboptimal treatment compliance is not restricted to cystinosis and has been observed in KTx and other chronic diseases&#46;<a class="elsevierStyleCrossRefs" href="#bib0335"><span class="elsevierStyleSup">17&#44;44</span></a></p><p id="par0490" class="elsevierStylePara elsevierViewall">Numerous converging risk factors that affect treatment adherence in cystinosis patients include a strict dosing regimen&#44; tolerance problems&#44; potential side effects and a complex multi-drug treatment plan&#46; Furthermore&#44; other equally important considerations not exclusive to cystinosis are&#58; limited knowledge of the disease&#44; lack of motivation&#44; inadequate transition to adult care and impact of the disease on quality of life&#46;<a class="elsevierStyleCrossRefs" href="#bib0290"><span class="elsevierStyleSup">8&#44;45</span></a> A further factor is that cystinosis patients often present neuropsychologic involvement and disabilities which&#44; when accompanied by neurocognitive immaturity&#44; may further affect the patient&#39;s ability to manage the chronic disease&#46;<a class="elsevierStyleCrossRef" href="#bib0455"><span class="elsevierStyleSup">41</span></a></p><p id="par0495" class="elsevierStylePara elsevierViewall">Assessing treatment adherence is essential in the patient&#39;s clinical follow-up&#44; compliance should be routinely included in their medical notes&#44; with an open and positive attitude that permits the correction of any prescription deviations&#46;<a class="elsevierStyleCrossRefs" href="#bib0480"><span class="elsevierStyleSup">46&#44;47</span></a> Thus&#44; it is recommended that the different professionals involved assess the patient&#39;s degree of adherence and actively intervene with measures for improvement<a class="elsevierStyleCrossRefs" href="#bib0450"><span class="elsevierStyleSup">40&#44;44&#8211;49</span></a> &#40;<a class="elsevierStyleCrossRef" href="#tbl0035">Table 6</a>&#41;&#46;</p></span><span id="sec0090" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0150">Conflicts of interest</span><p id="par0500" class="elsevierStylePara elsevierViewall">The authors declare that they have no conflicts of interests&#46;</p></span></span>"
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            0 => "Transici&#243;n"
            1 => "Adolescente"
            2 => "Cistinosis"
            3 => "Trasplante renal"
            4 => "Adherencia"
          ]
        ]
      ]
    ]
    "tieneResumen" => true
    "resumen" => array:2 [
      "en" => array:3 [
        "titulo" => "Abstract"
        "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0010">Introduction</span><p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">Improved outcome and longer life expectancy in patients with cystinosis and the intrinsic complexity of the disease&#44; underline the need for a guided transition of patients from pediatric to adult care&#46; The process aims to guarantee the continuum of care and enable the empowerment of patients from guardian to self-care&#46;</p></span> <span id="abst0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Methods</span><p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Bibliography review&#44; expert opinion and anonymous surveys of patients&#44; relatives and patient advocacy groups&#46;</p></span> <span id="abst0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Results</span><p id="spar0015" class="elsevierStyleSimplePara elsevierViewall">A new plan to support and coordinate the transition of cystinotic patients providing specific proposals for a variety of medical fields and improved treatment adherence&#46; Nephrologists play a key role in the transition since most cystinotic patients have severe chronic kidney disease and require kidney transplantation before adulthood&#46;</p></span> <span id="abst0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Conclusion</span><p id="spar0020" class="elsevierStyleSimplePara elsevierViewall">We present a proposal providing recommendations and a chronogram to aid the transition of adolescents and young adults with cystinosis in our area&#46;</p></span>"
        "secciones" => array:4 [
          0 => array:2 [
            "identificador" => "abst0005"
            "titulo" => "Introduction"
          ]
          1 => array:2 [
            "identificador" => "abst0010"
            "titulo" => "Methods"
          ]
          2 => array:2 [
            "identificador" => "abst0015"
            "titulo" => "Results"
          ]
          3 => array:2 [
            "identificador" => "abst0020"
            "titulo" => "Conclusion"
          ]
        ]
      ]
      "es" => array:3 [
        "titulo" => "Resumen"
        "resumen" => "<span id="abst0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Introducci&#243;n</span><p id="spar0025" class="elsevierStyleSimplePara elsevierViewall">El aumento de la supervivencia de los pacientes con cistinosis y la propia complejidad de la enfermedad explican la necesidad de implementar un proceso de transici&#243;n guiada desde la medicina pedi&#225;trica hasta la del adulto&#44; que permita garantizar el <span class="elsevierStyleItalic">continuum</span> asistencial y posibilite el empoderamiento del paciente desde el cuidado tutelado al autocuidado&#46;</p></span> <span id="abst0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">M&#233;todos</span><p id="spar0030" class="elsevierStyleSimplePara elsevierViewall">Revisi&#243;n bibliogr&#225;fica&#44; opini&#243;n de expertos&#44; encuestas an&#243;nimas a pacientes&#44; familiares y asociaciones&#46;</p></span> <span id="abst0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Resultados</span><p id="spar0035" class="elsevierStyleSimplePara elsevierViewall">Elaboraci&#243;n de un documento de transici&#243;n coordinada&#44; con propuestas concretas por especialidades y de mejora de la adherencia terap&#233;utica y del autocuidado del paciente&#46; El nefr&#243;logo desempe&#241;a un papel clave en la transici&#243;n en la cistinosis debido a la afectaci&#243;n renal que domina la patolog&#237;a y porque la mayor&#237;a de los pacientes han recibido un trasplante renal antes de la edad adulta&#46;</p></span> <span id="abst0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Conclusi&#243;n</span><p id="spar0040" class="elsevierStyleSimplePara elsevierViewall">Se presenta un documento que establece unas recomendaciones y un cronograma para guiar la transici&#243;n de los adolescentes y adultos j&#243;venes con cistinosis en nuestro &#225;mbito&#46;</p></span>"
        "secciones" => array:4 [
          0 => array:2 [
            "identificador" => "abst0025"
            "titulo" => "Introducci&#243;n"
          ]
          1 => array:2 [
            "identificador" => "abst0030"
            "titulo" => "M&#233;todos"
          ]
          2 => array:2 [
            "identificador" => "abst0035"
            "titulo" => "Resultados"
          ]
          3 => array:2 [
            "identificador" => "abst0040"
            "titulo" => "Conclusi&#243;n"
          ]
        ]
      ]
    ]
    "NotaPie" => array:1 [
      0 => array:2 [
        "etiqueta" => "&#9734;"
        "nota" => "<p class="elsevierStyleNotepara" id="npar0020">Please cite this article as&#58; Ariceta G&#44; Camacho JA&#44; Fern&#225;ndez-Obispo M&#44; Fern&#225;ndez-Polo A&#44; G&#225;mez J&#44; Garc&#237;a-Villoria J&#44; et al&#46; Transici&#243;n coordinada del paciente con cistinosis desde la medicina pedi&#225;trica a la medicina del adulto&#46; Nefrolog&#237;a&#46; 2016&#59;36&#58;616&#8211;630&#46;</p>"
      ]
    ]
    "multimedia" => array:10 [
      0 => array:7 [
        "identificador" => "fig0005"
        "etiqueta" => "Fig&#46; 1"
        "tipo" => "MULTIMEDIAFIGURA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "figura" => array:1 [
          0 => array:4 [
            "imagen" => "gr1.jpeg"
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        "descripcion" => array:1 [
          "en" => "<p id="spar0045" class="elsevierStyleSimplePara elsevierViewall">Barriers to transition in cystinosis&#46;</p>"
        ]
      ]
      1 => array:7 [
        "identificador" => "fig0010"
        "etiqueta" => "Fig&#46; 2"
        "tipo" => "MULTIMEDIAFIGURA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "figura" => array:1 [
          0 => array:4 [
            "imagen" => "gr2.jpeg"
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        "descripcion" => array:1 [
          "en" => "<p id="spar0050" class="elsevierStyleSimplePara elsevierViewall">Attitudes and perceptions in transition&#46;</p>"
        ]
      ]
      2 => array:8 [
        "identificador" => "tbl0010"
        "etiqueta" => "Table 1"
        "tipo" => "MULTIMEDIATABLA"
        "mostrarFloat" => true
        "mostrarDisplay" => false
        "detalles" => array:1 [
          0 => array:3 [
            "identificador" => "at1"
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        "tabla" => array:2 [
          "leyenda" => "<p id="spar0060" class="elsevierStyleSimplePara elsevierViewall">Adapted from Cooley et al&#46;<a class="elsevierStyleCrossRef" href="#bib0375"><span class="elsevierStyleSup">25</span></a></p>"
          "tablatextoimagen" => array:1 [
            0 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " rowspan="2" align="left" valign="top" scope="col" style="border-bottom: 2px solid black">Stages</th><th class="td" title="table-head  " align="center" valign="top" scope="col">Preadolescent 12&#8211;15 years old&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col">Adolescent 16&#8211;18 years old&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col">Young adult 19&#8211;25 years old&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr><tr title="table-row"><th class="td-with-role" title="table-head ; entry_with_role_rowhead " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Planning&#47;introduction to the transition&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Patient education&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Transfer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top">Disease</td><td class="td" title="table-entry  " align="left" valign="top">Know what he&#47;she is suffering from and can briefly explain what cystinosis entails&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Be able to explain the disease in greater detail&#44; describing multi-systemic involvement&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Understand the disease in depth&#44; as well as his&#47;her potential&#44; multi-systemic involvement and complications&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Recognize the extent of individual involvement&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Recognize symptoms&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="3" align="left" valign="top">Medication</td><td class="td" title="table-entry  " align="left" valign="top">Know the names of drugs&#44; daily dose and schedule&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Understand drugs in depth&#58; indication&#44; preparation&#44; storage&#44; side effects&#44; risk of autonomy&#44; drug interactions and an introduction to pharmacy circuits&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Autonomy in the preparation and administration of medication&#44; with minimum supervision&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Participate in the preparation and administration of medication&#44; with the supervision of a carer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Autonomy in the preparation and administration of medication&#44; with the supervision of a carer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Autonomy in pharmacy circuits&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Understand the benefits of correct administration and the risks of non-adherence&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Understand the benefits of correct administration and the risks of non-adherence in depth&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Full responsibility for good treatment compliance&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Lifestyle habits and prevention&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Start to understand health lifestyle habits &#40;diet&#44; physical exercise&#41;&#44; high-risk behavior and sexuality&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Understand and implement healthy lifestyle habits&#46; Taught about high-risk behavior &#40;drugs and alcohol&#41;&#44; sexually-transmitted diseases and unwanted pregnancy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Fully understand and implement healthy lifestyle habits&#46; Lack of high-risk behavior&#44; knowledge of sexual and reproductive health&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top">Relationship with the care team</td><td class="td" title="table-entry  " align="left" valign="top">Know the reference pediatric care team&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Initiate contact with the adult team &#40;sessions&#44; workshops&#44; associations&#44; mentors&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Know the reference adult care team&#44; the different specialists and the different levels of care involved in the process &#40;social worker&#44; primary care&#44; etc&#46;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Start to get involved at medical appointments and initiating communications with the care team&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Proactive attitude towards the care team&#44; and able to express doubts and ask questions&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Autonomy in communications with the care team&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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        "descripcion" => array:1 [
          "en" => "<p id="spar0055" class="elsevierStyleSimplePara elsevierViewall">Patient competencies and skills required for transition</p>"
        ]
      ]
      3 => array:8 [
        "identificador" => "tbl0015"
        "etiqueta" => "Table 2"
        "tipo" => "MULTIMEDIATABLA"
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            "identificador" => "at2"
            "detalle" => "Table "
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                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="3" align="left" valign="top"><span class="elsevierStyleBold">Contact</span></td><td class="td" title="table-entry  " align="left" valign="top">Hospital Kidney Transplant Clinic&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Optional&#58; according to the patient&#39;s clinical status&#44; consult nephrology or dialysis units&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Identify a suitable specialist to supervise follow-up&#46; Assess whether there is a reference nephrologist for hereditary and&#47;or rare kidney disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Referral criterion</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Age&#58; personalized criterion&#44; but preferably at 18 years of age&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Documentation for the receiving specialist</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Information about the disease</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Optional&#58; <span class="elsevierStyleItalic">recommendations for comprehensive cystinosis care from the T-CiS&#46;bcn group</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Patient&#39;s medical record</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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            1 => array:2 [
              "tabla" => array:1 [
                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><thead title="thead"><tr title="table-row"><th class="td" title="table-head  " colspan="3" align="center" valign="top" scope="col"><span class="elsevierStyleBold">Detailed anamnesis</span></th></tr><tr title="table-row"><th class="td" title="table-head  " colspan="3" align="left" valign="top" scope="col"><span class="elsevierStyleVsp" style="height:0.5px"></span></th></tr><tr title="table-row"><th class="td" title="table-head  " colspan="3" align="center" valign="top" scope="col">Anthropometric data &#40;weight and height&#41;&#44; blood pressure</th></tr><tr title="table-row"><th class="td-with-role" title="table-head ; entry_with_role_rowhead " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Kidney transplant&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Chronic dialysis&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th><th class="td" title="table-head  " align="center" valign="top" scope="col" style="border-bottom: 2px solid black">Chronic kidney disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</th></tr></thead><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Background</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Date&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Start date&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Stage of chronic kidney disease and rate of progression&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Type of transplant &#40;preventive or post-dialysis&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Type of dialysis &#40;hemodialysis or peritoneal dialysis&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Active status on the kidney transplant waiting list &#40;or not&#41; and why&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Donor characteristics &#40;alive or deceased&#44; HLA&#44; serologic tests&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Place of treatment &#40;hospital&#44; center&#44; home&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Patient characteristics &#40;HLA&#44; serologic tests&#44; other risks&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Receiver characteristics &#40;HLA&#44; serologic tests&#44; other risks&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Vascular access &#40;arteriovenous fistula&#44; catheter&#41;&#44; date and associated complications&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Quantified diuresis&#44; residual renal function and presence or absence of active Fanconi Syndrome&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Surgical report &#40;graft characteristics&#44; initial transplant evolution&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Active status on the kidney transplant waiting list &#40;or not&#41; and why Receiver characteristics &#40;HLA&#44; serologic tests&#44; other risks&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Graft biopsy &#40;protocol or elective&#44; date and findings&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Dialysis prescription and efficacy &#40;Kt&#47;V&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Anti-donor antibodies&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Quantified residual diuresis&#44; residual renal function and presence or absence of active Fanconi Syndrome&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Events</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Episodes of rejection&#44; acute renal failure&#44; hypertension&#44; cardiovascular involvement&#44; dyslipidemia&#44; diabetes&#44; bone disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Episodes of superimposed kidney failure&#44; hypertension&#44; cardiovascular involvement&#44; dyslipidemia&#44; diabetes&#44; bone disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Episodes of superimposed kidney failure&#44; hypertension&#44; cardiovascular involvement&#44; dyslipidemia&#44; diabetes&#44; bone disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="3" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Treatment plan</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Immunosuppression regimen&#58;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Secondary and therapeutic effects of the prescribed drugs&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Secondary and therapeutic effects of the prescribed drugs&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Initial&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Specific cysteamine therapy and intragranulocyte cystine levels&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Specific cysteamine therapy and intragranulocyte cystine levels&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Significant changes and causes&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Other treatments&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Other treatments&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Current&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Treatment adherence&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Treatment adherence&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Maintenance immunosuppressant levels&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8211;Side effects of immunosuppressants and other associated drugs&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Specific cysteamine therapy and intragranulocyte cystine levels&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Other treatments&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Treatment adherence&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="" valign="top">&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Additional investigations</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest blood test&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Kidney ultrasound scan&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Ocular fundus examination&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Ambulatory blood pressure monitoring&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Echocardiogram&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Extra-renal involvement of cystinosis</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Coordinated care with other specialists&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Psychosocial assessment</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Incapacity and disability&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Education&#47;labor autonomy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Family&#44; social and legal status&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Monitoring patient follow-up</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Apply the KDIGO guidelines &#40;<a class="elsevierStyleInterRef" id="intr0005" href="http://www.kdigo.org/">www&#46;kdigo&#46;org</a>&#41; or recommendations issued by scientific nephrology societies on the follow-up of kidney transplant&#44; dialysis and pre-dialysis patients with chronic kidney disease&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">4&#46; Monitoring adherence to the topical ophthalmic treatment&#44; systemic cysteamine therapy and other prescribed drugs</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleBold">Contact</span></td><td class="td" title="table-entry  " align="left" valign="top">Cornea and Ocular Surface Unit of the Hospital Ophthalmology Department&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Identify a cornea specialist to supervise follow-up&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Referral criterion</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Age&#58; personalized criterion&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Documentation for the receiving specialist</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Information about the disease</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Optional&#58; <span class="elsevierStyleItalic">Recommendations for comprehensive cystinosis care from the T-CiS&#46;bcn group</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Patient&#39;s medical record</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Patient monitoring</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>In adolescence &#40;16&#8211;18&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Tests every 6 months&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>In adults&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Tests every year&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">4&#46; Recommendations for optimal periodic follow-up</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Slit lamp biomicroscopy</td><td class="td" title="table-entry  " align="left" valign="top">Assess the cornea and anterior segment<a class="elsevierStyleCrossRef" href="#tblfn0005"><span class="elsevierStyleSup">a</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">It is of interest to describe any corneal crystal distribution at each examination&#44; specifying whether they are only deposited at the periphery or if their distribution is diffuse&#44; and whether they are located in the epithelium&#44; stroma and&#47;or endothelium&#46; This information will allow for better follow-up in the future&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Measure intraocular pressure</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Examination of the ocular fundus under mydriasis</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">5&#46; Recommendations in exceptional circumstances</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Photopic and scotopic electroretinogram&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">If the patient mentions night vision problems or if the ocular fundus is altered&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Ocular fundus examination 2&#8211;3 months after starting treatment with certain drugs &#40;growth hormone&#44; oral contraceptives&#44; etc&#46;&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">If the patient is undergoing treatment with drugs that have a reported association with benign idiopathic intracranial hypertension and if they present headaches&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Ophthalmologic emergency&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">If the patient mentions a severe and&#47;or acute loss of vision&#44; given that these symptoms are not typical of cystinosis&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">6&#46; Topical ophthalmic treatment</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a></td><td class="td" title="table-entry  " align="left" valign="top">Cysteamine saline solution 0&#46;55&#37;&#46; Cysteamine viscous solution 0&#46;55&#37;&#46; Up to 4 times a day&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">One drop 10&#8211;12 times a day&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">7&#46; Monitoring adherence to the topical ophthalmic treatment&#44; systemic cysteamine therapy and other prescribed drugs</span></td></tr></tbody></table>
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              "nota" => "<p class="elsevierStyleNotepara" id="npar0005">The presence of corneal cystine crystals is universal and is the main ocular target in cystinosis&#46;</p> <p class="elsevierStyleNotepara" id="npar0010">Taken from Ariceta et al&#46;<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a></p>"
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          "en" => "<p id="spar0070" class="elsevierStyleSimplePara elsevierViewall">Recommendations for the transition to adult ophthalmology</p>"
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          "leyenda" => "<p id="spar0085" class="elsevierStyleSimplePara elsevierViewall">BV&#58; baseline value prior to the treatment&#46;</p>"
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleBold">Contact</span></td><td class="td" title="table-entry  " align="left" valign="top">Endocrinology Department&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Identify a suitable specialist to supervise follow-up&#46; Assess whether there is a reference endocrinologist for hereditary and&#47;or rare diseases&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Referral criterion</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Age</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Personalized criterion&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Pubescent stage at transfer</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Tanner IV or below&#44; or a history of delayed puberty &#40;onset of puberty&#58; &#9794;<span class="elsevierStyleHsp" style=""></span>&#62;<span class="elsevierStyleHsp" style=""></span>14 years old&#59; &#9792;<span class="elsevierStyleHsp" style=""></span>&#62;<span class="elsevierStyleHsp" style=""></span>12 years old&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">If receiving treatment with&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Thyroxine&#44; insulin&#44; GH or testosterone&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Analytical abnormalitites in follow-up endocrine parameters</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&#58;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">T4L&#44; TSH&#44; glycemia&#44; HbA1c&#44; GH&#44; IGF-1&#44; testosterone&#44; LH&#44; FSH&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">Gestational desire</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Documentation for the receiving specialist</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Information about the disease&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Optional&#58; <span class="elsevierStyleItalic">Recommendations for comprehensive cystinosis care from the T-CiS&#46;bcn group</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Patient&#39;s medical record</span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;1&#46; Clinical data</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Staturo-ponderal development&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Weight&#44; height and weight&#47;height percentile at last visit &#40;ideally a scanned copy of the patient&#39;s height and weight chart&#41; and bone age&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Pubescent development&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Tanner maturity stage upon transfer&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; If the patient presents diabetes&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Data relating to the study of chronic complications and other vascular risk factors&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;2&#46; Analytical data &#40;latest value&#47;date&#41;</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; T4L&#44; TSH</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Glycemia&#44; HbA1c</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; GH&#44; IGF-1</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; &#177;GH secretion test</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Testosterone&#44; LH&#44; FSH</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;3&#46; Hormone replacement therapy</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; &#40;BV&#47;BV date&#47;treatment start date&#47;preparation and dosage&#47;recent dosage changes&#47;functional tests&#41;</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Thyroxine</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Insulin</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; GH</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Testosterone</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Monitoring adherence to the topical ophthalmic treatment&#44; systemic cysteamine therapy and other prescribed drugs</span></td></tr></tbody></table>
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          "leyenda" => "<p id="spar0095" class="elsevierStyleSimplePara elsevierViewall">MRC&#58; Medical Research Council scale&#46;</p>"
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                0 => """
                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleBold">Contact</span></td><td class="td" title="table-entry  " align="left" valign="top">Neurology Department&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Identify a suitable specialist to supervise follow-up&#46; Assess whether there is a reference neurologist for hereditary and&#47;or rare diseases&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Referral criterion</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Age&#58; personalized criterion&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleBold">Documentation for the receiving specialist</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Information about the disease&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Optional&#58; <span class="elsevierStyleItalic">Recommendations for comprehensive cystinosis care from the T-CiS&#46;bcn group</span><a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Patient&#39;s medical record</span></td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Information regarding the presence of neurocognitive&#44; behavioral or school performance problems&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Almost 50&#37; of children under the age of 18 present alterations in their overall cognitive performance&#44; with repercussions on school performance&#46; Problems with&#58; attention&#44; executive functions&#44; language and memory have also been identified&#44; as well as with perceptive&#44; visuospatial and visuoconstructional functions and voluntary cognitive motor control&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest neuropsychologic explorations&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Assess overall cognitive performance and report the presence &#40;or absence&#41; of anxiety&#44; depression and behavioral alterations&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest muscular strength assessment</td><td class="td" title="table-entry  " align="left" valign="top">Manual MRC and quantitative determinations of hand muscle strength by means of validated dynamometers&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">In the event that distal myopathy is present&#44; its functional repercussion on the patient&#39;s daily activities will be provided&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest report on orofacial and deglutory motor function and respiratory function&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td><td class="td" title="table-entry  " align="left" valign="top">Report episodes of bronchoaspiration or recurrent pneumonia&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " rowspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Latest neuroimaging tests</td><td class="td" title="table-entry  " align="left" valign="top">Report calcifications&#44; brain volume loss and other anomalies&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top">Quantify the degree of cerebral atrophy&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span></td></tr><tr title="table-row"><td class="td" title="table-entry  " colspan="2" align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Monitoring adherence to the topical ophthalmic treatment&#44; systemic cysteamine therapy and other prescribed drugs</span></td></tr></tbody></table>
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Therapeutic adherence assessment methods</span><a class="elsevierStyleCrossRefs" href="#bib0480"><span class="elsevierStyleSup">46&#44;47</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Direct methods</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>1&#46;1&#46; Monitoring of intragranulocyte cystine levels &#40;6<span class="elsevierStyleHsp" style=""></span>h post-Cystagon<span class="elsevierStyleSup">&#174;</span> dosing&#41;<a class="elsevierStyleCrossRefs" href="#bib0295"><span class="elsevierStyleSup">9&#44;12</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Good therapeutic control&#58; &#60;<span class="elsevierStyleBold">1</span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleBold">nmol &#189; cystine&#47;mg protein</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; In patients who do not receive treatment with cysteamine&#44; levels are usually<span class="elsevierStyleHsp" style=""></span>&#62;<span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleBold">1&#46;5</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; This method may be influenced by individual factors such as drug absorption&#44; extraction and sample shipment conditions<a class="elsevierStyleCrossRef" href="#bib0345"><span class="elsevierStyleSup">19</span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>1&#46;2&#46; Assessment of corneal cystine deposits&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>&#8226; Detail any corneal crystal distribution at each slit lamp examination&#44; specifying whether they are only deposited at the periphery or if their distribution is diffuse&#44; and whether they are located in the epithelium&#44; stroma and&#47;or endothelium&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Indirect methods</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;1&#46; One-to-one interview with the patient &#40;always assess adherence during the appointment&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;2&#46; Adherence questionnaire&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;3&#46; Drug dispensing record of the Hospital Pharmacy Department&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;4&#46; Count the patient&#39;s leftover medication at each dispensation&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>2&#46;5&#46; Use of electronic devices and specific computer applications to record administrations&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleBold">Measures for improving therapeutic adherence</span><a class="elsevierStyleCrossRefs" href="#bib0450"><span class="elsevierStyleSup"><span class="elsevierStyleBold">40&#8211;42&#44;44&#8211;49</span></span></a>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">1&#46; Identify any risk factors affecting adherence and apply corrective measures whenever possible</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Socioeconomic and patient-related factors&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Disease-related factors&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Treatment-related factors&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Health organization barriers&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">2&#46; Promote the patient health education&#44; the treatment benefits and the consequences of non-adherence</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">3&#46; Foster the support of those close to the patient&#44; involving the family and patient associations</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">4&#46; Implement direct non-adherence detection measures</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">5&#46; Implement indirect non-adherence detection measures</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">6&#46; Implement direct treatment compliance support measures</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Agree on treatment plans with the patient and review these at each appointment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Inform the patient of potential side effects of the treatment and about interventions to alleviate them&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Simplify the treatment as much as possible&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Plan and adapt the medication to the patient&#39;s daily routine&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Provide written resources on the planned medication&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Implement measures to avoid forgotten doses&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Place the medication in a visible location&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Use digital alarms and reminders on mobile devices&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Use medicine dispensers or weekly blisters&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Have a spare dose at hand to cover forgotten doses &#40;wallet&#44; office&#44; car&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Arrange a pharmacotherapy and pharmaceutic care follow-up program&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">7&#46; Promote the continuum of care and schedule regular appointments&#46; Telephone follow-up for patients who do not comply with the appointment schedule</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">8&#46; Identify and appoint a &#8220;case manager&#47;coordinator&#8221; to manage the transition and advise the patient as appropriate</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">9&#46; Create a multidisciplinary medical team&#58; schedule regular Committee of Experts meetings for patient follow-up</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">10&#46; Implement multidisciplinary care programs that contemplate prevention&#44; detection and measures for improving therapeutic compliance</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">11&#46; Implement protocols for patient transition to adult care that ensure prevention&#44; detection and treatment compliance</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">12&#46; Foster a good relationship between the patient&#47;carer and medical team</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleItalic">13&#46; Implement protocol-based programs for the transition to adult care</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Planning the medical appointment&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check my schedule&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check my cystinosis medical kit and whether I need to renew my prescriptions&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check if I have any new documents from other specialists since my last medical visit&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Attend prearranged blood tests and check whether these include a cystine level determination &#40;remember to take Cystagon<span class="elsevierStyleSup">&#174;</span> 6<span class="elsevierStyleHsp" style=""></span>h prior to the blood draw&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check whether I am due any other complementary test prior to the medical visit&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Go to the pharmacy department to pick up the scheduled medication&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Before the medical appointment&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Write down any questions and&#47;or doubts you want to raise with the medical team&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make a note of any symptoms or health problems you have experienced since your last appointment &#40;since when&#44; how it passes&#44; what makes it worse&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make a note of your blood pressure and glucose tests if your doctor tells you to do so&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">During the appointment&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Do not be afraid to ask as many times as is necessary in order to clarify any doubts you may have&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make a note of any information you wish to remember&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Ask for your test results&#44; including your cystine levels and medical tests&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Ask the doctor or nurse to assess your results and how you are doing&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make sure you fully understand the instructions given to you by your doctor regarding changes to your treatment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check that you have your new treatment regimen in writing&#44; as well as up-to-date prescriptions&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Before the appointment ends&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check that you have written down the date of your next appointment&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make sure you have the contact details of your medical team &#40;telephone and email&#41;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Find out whether there have been any advances regarding your illness&#44; and whether there are any patient association meetings or conferences that may be of interest&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">When you get home&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Check that you understand the treatment changes you were told about&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Prepare your weekly medical kit in accordance with your new treatment regimen&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Note down your next appointment in your diary&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>File any new documents&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Make an appointment with your family doctor to explain the content of the visit and the changes made&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Cystinosis dossier&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Prepare a file in which you can save any documentation in an orderly manner&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">Documents to include&#58;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>1&#46; Medical visit schedule&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>2&#46; List of contacts&#58;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Hospital&#58; appointment line&#44; specialist physicians&#44; nursing team&#44; case manager&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Primary Care Center&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Patient Association&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span><span class="elsevierStyleHsp" style=""></span>Other useful telephone numbers&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>3&#46; Medical reports ordered by date and specialist&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>4&#46; Immunization card&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>5&#46; Record of allergies&#44; if any&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>6&#46; Any documents from appointments&#44; examinations and blood tests&#44; etc&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>7&#46; Prescription monitoring&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>8&#46; Medication monitoring&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
                  """
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              "nota" => "<p class="elsevierStyleNotepara" id="npar0015">Adapted from &#8220;Information prescription for patients with cystinosis&#8221; &#8211; Queen Elizabeth Hospital Birmingham&#44; with the authorization of Mr&#46; Steven Wise-Renal Metabolic Disease Nurse Specialist&#46;<a class="elsevierStyleCrossRef" href="#bib0500"><span class="elsevierStyleSup">50</span></a></p>"
            ]
          ]
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          "en" => "<p id="spar0105" class="elsevierStyleSimplePara elsevierViewall">Recommendations for promoting self-care among adolescent and young adult patients &#91;adapted from ref&#46; <a class="elsevierStyleCrossRef" href="#bib0500"><span class="elsevierStyleSup">50</span></a>&#93;<a class="elsevierStyleCrossRef" href="#tblfn0010"><span class="elsevierStyleSup">a</span></a></p>"
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                  <table border="0" frame="\n
                  \t\t\t\t\tvoid\n
                  \t\t\t\t" class=""><tbody title="tbody"><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">When&#63;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>The changeover should only take place after a transition period dedicated to preparing the adolescent&#47;young adult and receiving unit by providing the information required for treating the disease&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Planning&#58; to start the process in preadolescence &#40;12&#8211;14 years&#41;&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>At a time of clinical and emotional stability&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleVsp" style="height:0.5px"></span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleItalic">How&#63;</span>&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Personalized for each patient&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Gradual&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Consensus with the patient and family&#44; and in agreement with the pediatric and adult healthcare teams&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>After completion of compulsory education&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Gradually provide the patient with information&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Involve the patient&#39;s family and close friends for support&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Introduce the patient to the new medical team prior to the changeover at an informal visit&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Process supervised by &#8220;transition leaders&#8221; from the pediatric and adult units&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Have a predefined transition plan&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Identify the case manager&#47;process coordinator&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Have the support of patient groups&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Take into account the treatment plans of the different medical specialities&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Provide the patient with support tools for self-management&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr><tr title="table-row"><td class="td-with-role" title="table-entry ; entry_with_role_rowhead " align="left" valign="top"><span class="elsevierStyleHsp" style=""></span>Take economic factors into account&#46;&nbsp;\t\t\t\t\t\t\n
                  \t\t\t\t</td></tr></tbody></table>
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    "bibliografia" => array:2 [
      "titulo" => "References"
      "seccion" => array:1 [
        0 => array:2 [
          "identificador" => "bibs0005"
          "bibliografiaReferencia" => array:50 [
            0 => array:3 [
              "identificador" => "bib0255"
              "etiqueta" => "1"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Cystinosis"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:3 [
                            0 => "W&#46;A&#46; Gahl"
                            1 => "J&#46;G&#46; Thoene"
                            2 => "J&#46;A&#46; Schneider"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1056/NEJMra020552"
                      "Revista" => array:6 [
                        "tituloSerie" => "New Engl J Med"
                        "fecha" => "2002"
                        "volumen" => "347"
                        "paginaInicial" => "111"
                        "paginaFinal" => "121"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/12110740"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            1 => array:3 [
              "identificador" => "bib0260"
              "etiqueta" => "2"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Cysteamine depletes cystinotic leucocyte granular fractions of cystine by the mechanism of disulphide interchange"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:4 [
                            0 => "W&#46;A&#46; Gahl"
                            1 => "F&#46; Tietze"
                            2 => "J&#46;D&#46; Butler"
                            3 => "J&#46;D&#46; Schulman"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:1 [
                      "Revista" => array:6 [
                        "tituloSerie" => "Biochem J"
                        "fecha" => "1985"
                        "volumen" => "228"
                        "paginaInicial" => "545"
                        "paginaFinal" => "550"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/4026796"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            2 => array:3 [
              "identificador" => "bib0265"
              "etiqueta" => "3"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Cysteamine therapy delays the progression of nephropathic cystinosis in late adolescents and adults"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "A&#46; Brodin-Sartorius"
                            1 => "M&#46;J&#46; T&#234;te"
                            2 => "P&#46; Niaudet"
                            3 => "C&#46; Antignac"
                            4 => "G&#46; Guest"
                            5 => "C&#46; Ottolenghi"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1038/ki.2011.277"
                      "Revista" => array:6 [
                        "tituloSerie" => "Kidney Int"
                        "fecha" => "2012"
                        "volumen" => "81"
                        "paginaInicial" => "179"
                        "paginaFinal" => "189"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/21900880"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            3 => array:3 [
              "identificador" => "bib0270"
              "etiqueta" => "4"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Improvement in the renal prognosis in nephropathic cystinosis"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "K&#46;J&#46; Van Stralen"
                            1 => "F&#46; Emma"
                            2 => "K&#46;J&#46; Jager"
                            3 => "E&#46; Verrina"
                            4 => "F&#46; Schaefer"
                            5 => "G&#46;F&#46; Laube"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.2215/CJN.02000311"
                      "Revista" => array:6 [
                        "tituloSerie" => "Clin J Am Soc Nephrol"
                        "fecha" => "2011"
                        "volumen" => "6"
                        "paginaInicial" => "2485"
                        "paginaFinal" => "2491"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/21868618"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            4 => array:3 [
              "identificador" => "bib0275"
              "etiqueta" => "5"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "The history of cystinosis&#58; lessons for clinical management"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => false
                          "autores" => array:1 [
                            0 => "P&#46; Goodyer"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.4061/2011/929456"
                      "Revista" => array:5 [
                        "tituloSerie" => "Int J Nephrol"
                        "fecha" => "2011"
                        "volumen" => "2011"
                        "paginaInicial" => "929456"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/22013525"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            5 => array:3 [
              "identificador" => "bib0280"
              "etiqueta" => "6"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Nephropathic cystinosis&#58; an international consensus document"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "F&#46; Emma"
                            1 => "G&#46; Nesterova"
                            2 => "C&#46; Langman"
                            3 => "A&#46; Labb&#233;"
                            4 => "S&#46; Cherqui"
                            5 => "P&#46; Goodyer"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1093/ndt/gfu090"
                      "Revista" => array:7 [
                        "tituloSerie" => "Nephrol Dial Transplant"
                        "fecha" => "2014"
                        "volumen" => "29"
                        "numero" => "Suppl&#46; 4"
                        "paginaInicial" => "iv87"
                        "paginaFinal" => "iv94"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/25165189"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
            ]
            6 => array:3 [
              "identificador" => "bib0285"
              "etiqueta" => "7"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Transition from pediatric to adult renal services&#58; a consensus statement by the International Society of Nephrology &#40;ISN&#41; and the International Pediatric Nephrology Association &#40;IPNA&#41;"
                      "autores" => array:1 [
                        0 => array:2 [
                          "etal" => true
                          "autores" => array:6 [
                            0 => "A&#46;R&#46; Watson"
                            1 => "P&#46;N&#46; Harden"
                            2 => "M&#46;E&#46; Ferris"
                            3 => "P&#46;G&#46; Kerr"
                            4 => "J&#46;D&#46; Mahan"
                            5 => "M&#46;F&#46; Ramzy"
                          ]
                        ]
                      ]
                    ]
                  ]
                  "host" => array:1 [
                    0 => array:2 [
                      "doi" => "10.1038/ki.2011.209"
                      "Revista" => array:6 [
                        "tituloSerie" => "Kidney Int"
                        "fecha" => "2011"
                        "volumen" => "80"
                        "paginaInicial" => "704"
                        "paginaFinal" => "707"
                        "link" => array:1 [
                          0 => array:2 [
                            "url" => "https://www.ncbi.nlm.nih.gov/pubmed/21832978"
                            "web" => "Medline"
                          ]
                        ]
                      ]
                    ]
                  ]
                ]
              ]
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            7 => array:3 [
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              "etiqueta" => "8"
              "referencia" => array:1 [
                0 => array:2 [
                  "contribucion" => array:1 [
                    0 => array:2 [
                      "titulo" => "Bridging the gap&#58; an integrated paediatric to adult clinical service for young adults with kidney failure"
                      "autores" => array:1 [
                        0 => array:2 [
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Article information
ISSN: 20132514
Original language: English
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Nefrología (English Edition)