Évaluation d'une clinique de transition et de jeunes adultes en transplantation rénale

Transition from pediatric to adult care is a demanding process for chronically ill young patients, because it takes place during a period of their life when many changes happen simultaneously. Because they are not entirely autonomous yet, youths must learn to take care of themselves while they are being parachuted in a new environment, within a new medical team. The lack of guidance can lead some to take their medicines erratically or to miss appointments. In kidney transplantation, decreased treatment adherence rates can have consequences such as rejection episodes, which sometimes lead to graft loss. To mitigate these problems, two nephrologists from the CHU Sainte-Justine and one nephrologist from the Centre hospitalier de l’Université de Montréal (CHUM) consulted one another to set up a young adult clinic for kidney transplant recipients. This clinic is specifically destined to young adults, those who transitioned as well as those transplanted as adults. This thesis aims to conduct the process evaluation as well as the evaluation of the clinical and psychosocial outcomes of the young adult clinic (YAC), by comparing its group of patients to the young patients who are attending the regular adult clinic (RAC).  In the first article, which presents the process evaluation, semi-structured interviews are conducted with 10 YAC patients, to describe their experience of the clinic and identify its key components as well as possible areas of improvement. Thematic analysis highlights six themes that characterize patients’ experience: (a) autonomy support versus overprotection, (b) stability anchors through uncertainty, (c) identification and belongingness, (d) complementarity of approaches between pediatric and adult care settings, (e) an environment matching young adults’ lifestyles and (f) reasons for non-adherence. In the second article, which presents the outcome evaluation, a quantitative and qualitative mixed methodology is used to contrast the experience of 17 YAC patients with the experience of 16 RAC patients, to verify the YAC’s efficiency and to check if self-determination theory (SDT) is relevant in our context. Comparative quantitative analyses reveal that the YAC seems efficient especially during the critical period post-transition or post-transplant in adult setting. Attending the YAC seems to minimize the incidence of medical complications, to improve treatment adherence and patients’ physical quality of life. Correlational analyses establish relationships between SDT variables (perceived autonomy support, autonomous or controlled motivation, perceived competence), treatment adherence and quality of life. Thematic analysis highlights four themes: (a) resilience, (b) relational needs and the therapeutic alliance, (c) quest for balance and (d) quest for normalcy. On the basis of the findings presented in the two articles, recommendations are formulated in order to improve the YAC services and to serve as guidelines for the development of similar transition initiatives.

Keyphrases: Kidney transplantation, Transition from pediatric to adult care, Young adult clinic, Self-determination theory, Mixed-methods research, Thematic analysis, Process evaluation, Outcome evaluation