The training for mentor patients consisted of 6 meetings where 2 intensive workshops were implemented in two 4-h sessions. The delivery of these workshops was led by a team of psychologists trained in "Skills for conducting peer support groups in CKD" and with extensive experience in chronic patient management.

Within this training 2 types of evaluations were carried out:

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  Evaluation of satisfaction with the training received.

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  Evaluation of skills acquired.

In order to obtain information to know how the training had been developed, about aspects related to the contents, the methodology and the teaching team, the attendees were asked for give their opinion by means of a mixed questionnaire: quantitative and qualitative.

The quantitative part was composed of 9 items, which referred to the contents, utility, organization and logistics, duration and quality of the teacher.

The quantitative questions were measured through a 10-point Likert scale:

In general terms, all the indicators evaluated had obtained very high scores, as seen in Fig. 2. All variables, with the exception of the duration of the workshops, have been rated with scores higher than 9. The highest rated aspects were those that referred to the "content of the topics"; "the work method used" and "the organisation and logistics", obtaining an average of 9.2. The overall assessment of the training obtained a 9.4, very close to the maximum value.

Fig. 2.

Quantitative results of the training received by mentors.

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To assess the level of competencies (knowledge and skills) of the mentors acquired after the training, the attendees were given a situational questionnaire before and after the training that allowed them to know the capacity of those attending the training to carry out a "peer support" to groups of patients with CKD. The questionnaire consists of 10 items with 4 alternatives response. The PRE questionnaire was administered on the first day of in-person training and the POST questionnaire on the last day of in-person training. The 10 variables measured by this questionnaire are presented in Fig. 3. The items that experienced the greatest improvement were "that is to help adequately" (item 1) increasing the percentage of selections from 36.8% in the PRE questionnaire to 76.3% in the POST questionnaire, "Give emotional support" (item 6) from 44.7% in the PRE to 55.3% in the POST and "The goal in the face of a disease such as CKD is that the person" (item 9) that went from 65.8% of selection in the PRE to 84.2% in the POST. The results are shown by percentage of selections per item analysed (Fig. 3).

Fig. 3.

Evaluation and results of the skills acquired by the mentors during the training. Percentage of selections per item analysed.

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A 52% of attendees were men. Attendees aged 61–70 were the largest group (30%) followed by those over 71 years old (28%). The age group that participated to a lesser extent was 41–50 years (9%). 70% of the participants were in a couple or married.

When considering this type of current treatment, 78% of the attendees were patients and 22% were family members. 65% of the patients were in the CKD clinics, 29% in haemodialysis and 6% in manual peritoneal dialysis. All attending patients had less than 6 months in the current technique and had no previous experience in another type of renal replacement technique. Of the 121 people who participated in the mentoring program, 78% were patients and 22% were caregivers.

The mentoring program has been evaluated throughout the process to determine the impact and satisfaction of the program in the patients who have participated in the mutual support groups. The indicators evaluated were the utility, willingness to change and satisfaction in a quantitative way through an ad hoc questionnaire that was administered to the participating patients at the end of each group session. In addition, a qualitative POST evaluation was performed, after the end of most mutual support groups. Three focus groups were held that have allowed the viability and adjustment of the program to be expanded and deepened, including group interviews with both mentors and professionals who have participated in each healthcare centre.

To evaluate the impact of the mutual aid groups, the attendees were asked about the utility or contribution that the sessions had had in their day to day life. To which 97% considered that the program had contributed something to their day to day life with the disease. Given the qualitative question about what it had done for them, the answers they gave were categorized into 6 non-exclusive categories: knowledge of kidney disease, disease, safety, normalization, peace of mind, improved coping, increased self-care awareness and the reduction of specific fears.

Another of the impact indicators analysed was the willingness to change, for which the participating patients were asked what changes they consider to implement as a result of having attended the mentoring group sessions. 65% of patients consider making a change in their life, compared to 35% who do not consider doing so. As for the changes they consider incorporating, the answers they gave were categorised into 5 categories: lifestyle in general (i.e.: changing my lifestyle), food (i.e.: adapting food), physical activity (i.e.: following the recommendations on physical activity), smoking (i.e.: trying to stop smoking) and coping (i.e.: adapting better to the future).

All items that assess satisfaction and utility have shown a very high score, above the value 8.5, very close to the maximum score of 10.

It should be noted that the item with the highest score in the 3 sessions was "How comfortable you felt", close in 3 sessions to the maximum value (Fig. 4).

Fig. 4.

Evaluation and results of the skills acquired by the mentors during the training. Satisfaction of the patients (attendees) by sessions.

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Two focus groups were held, one in Madrid and one in Barcelona, and a total of 8 mentors participated.

Overall opinion of the mentoring program:

The group of mentors considers the mentoring program very positive; they see it necessary and useful because it addresses emotional aspects that are not usually addressed; they believe it is powerful because it is from patients for patients but, nonetheless, they consider it essential to give continuity in a medium-long term.

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  M4: "It is a program that meets such an important need (referring to emotional aspects) and the physical aspect of kidney disease"

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  M5: "I believe that it satisfies the patient's needs emotionally and mentally"

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  M6: "For me it has been very good especially in the emotional sense because people were in the need of saying what they felt, of talking about their fears, of checking that theirs was the same as that of others and it was very good for everyone, and our meetings were very short"

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  M7: "It is a support group of patients for patients and I think that is the strength of the program"

Changes and adjustments of the program to make it sustainable:

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  Dissemination or publicity of patient support groups:

Mentors believe that dissemination or publicity is an aspect to be enhanced as they perceive that information about mutual help groups does not reach all patients.

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  M4: "The issue of publicity, of reaching everyone, of having a marketing meeting, how to publicize everything so that all of us have access"

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  Duration of the sessions:

Regarding the duration of the sessions, they unanimously consider that it is short.

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  M6: "It is short, not possible in one hour, we were there up to 2 h"

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  M4: "The sessions went well in an hour and a half, impossible in one hour"

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  Increasing the number of sessions:

Along the same lines as the duration, mentors consider the number of sessions to be low (the program is designed with 3 sessions); they value increasing the number of sessions periodically over time.

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  M6: "Three sessions is not enough, we want more"

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  M7: "They are very few"

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    Ensure continuity of long-term programs:

The benefits of the program have been described and it is the mentors who call for a long-term continuity of this type of activity.

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  M4: "If you make a huge effort, as you are making in the management of training, in managing mentors, to arrange patients, the doctors behind it, involves a superstructure that demands a lot of effort, why leave it with such little time?"

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    Constant support from health personnel:

According to the mentors' point of view, these types of programs are not viable if there is no ongoing collaboration with health professionals.

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  M5: "Let the doctors explain to the patients that they should start in this and say: look, we have this type of workshop. Why don't you come in? It is a push that many patients need and I include myself"

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  M4: "I think that total autonomy should not be given to the mentors, but there may be more autonomy, more independence with respect to the dynamics of each group, but always with the support of the healthcare professionals"

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  M1: "All this starts with the doctor's involvement; he or she is the one who has to say: I am organising a group of this many people, and we (the mentors) go there"

In the case of health professionals, a focus group was held in Madrid in which a total of 10 professionals participated, with at least one representative from each centre attending.

Overall opinion of the mentoring program:

The group of health professionals considers the mentoring program very positive and satisfactory. Specifically they see it as:

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  Necessary:

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    P1: "It has covered a gap that professionals cannot fill"

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  Powerful:

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    P4: "We have been surprised by the level of influence that peer work possesses. The level of credibility and trust they generate between them"

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  Conciliatory/shortening distances:

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    P3. "It improves the relationship with the patients who have participated. We have identified the patients who have participated and there is a significant change in relationships with other patients and professionals. If they felt unheard, an distant, they have managed to overcome those limitations "

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  Complete:

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    P1: "Because it benefits the patients who participate in the groups as well as the mentors themselves, who told us: I have reinvented myself as a person. It also helps us, professionals, because there is information received that sometimes from professional to patient, is hard to get"

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  Building support networks:

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    P5: "In spite of having finished the sessions, there have been emails, telephone calls and when one of the mentored patients has been admitted they are called and they are given support. Networks have been made that you cannot reach"

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  Giving a leading role to the patient:

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    P8: "The patient has been given a leading role he or she did not have. Both the mentor patient and the recipient have been given a leading role and a space they did not have"

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  It facilitates coping resources in a simple way:

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    P3. "Patients are very decisive. With the issue of meals, for a person who was not going out for dinner because he or she felt he or she could not eat anything, a very simple rule was explained to them: If you are going out to eat meat or fish, in a certain amount and without sauce, thus you will never have a problem, and that helped you overcome the fear of eating out. They simplify it with something called experience"

Changes and adjustments of the program to make it sustainable:

Homogenizing the type of patient to whom it is intended:

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  Although the project is aimed at patients with CKD, some hospitals also included patients in other stages. This is an aspect to be assessed because expanding the type of patient to whom it is intended would facilitate more patients to benefit from the resource.

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    P2: "We have only worked with patients with CKD, but I think that in other places they have included transplanted patients, patients on dialysis, etc."

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  Finding ways to reduce the difficulties involved in having chronic patient groups to reach agreements:

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    P3. "The greatest difficulty is to get groups of people to agree: some have to go to work and cannot do it, others can only do it one day, others only in the morning, etc., you have to combine the schedules of many people and there are people who are very interested, but then they can never do it, etc."

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    P2: "The problems that we have encountered at ACKD are that they have such a busy schedule of tests, that for them a session of talking with others is an overexertion, and they are already coming to the hospital too much to come back, etc."

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  Assigning a coordinator so that patients have a reference point within the care team:

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    P5: "Patients told us that they needed a coordinator to call in case they cannot get there or have a problem. A point of contact apart from the mentors"

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  Expand the number of sessions over time:

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    P1: "It is a shame not to take advantage of the networks that are generated among patients because there are some who ask you to follow up once a month, have more meeting times"

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    P6: "An idea would be to keep the 3 sessions with closed groups and then continue with open sessions by themes every so often for open groups of patients who have already done the 3 sessions"

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  Material to disseminate the program among the care team:

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    P8: "It would help to have some material for our partners because as we are starting, you plan to grow more, for example, make groups for the recently transplanted, etc."

Finally, it should be noted that a “Profile of the mentor patient” was developed in both focus groups independently (both with mentoring patients and with healthcare professionals) that, together with the research work of the group of psychologists of the program, has reached the consensus of the criteria to be taken into account for the detection of potential patients described in table 3.