Engagement actif des patients en éducation médicale : codéveloppement d'un programme de patients formateurs adolescents avec arthrite juvénile

Juvenile idiopathic arthritis (JIA) is one of the most prevalent chronic diseases among adolescents in Canada (Levy & Twilt, 2017). Its diagnosis is largely based on the pediatric musculoskeletal examination (pMSK). However, there seems to be a need to develop new strategies for the pMSQ exam teaching (Foster & Rapley, 2010). In adults, several programs involving patient educators with chronic arthritis have been developed and have shown benefits for both learners and patients themselves (Hassell, 2012). To our knowledge, this type of program does not currently exist for the adolescent population with juvenile arthritis, or with other chronic illness. Therefore, we propose to develop a patient educator program engaging adolescents with JIA with the aims to 1) respond to a specific identified training need and 2) include the perspective of a group of underrepresented patients in medical education. Our main objective is to explore factors and processes that need to be considered in the creation, eventual implementation and evaluation of this future program. In order to meet this objective, we adopted a qualitative methodology. Semi-structured interviews were conducted with 19 adolescents with juvenile arthritis from two Canadian pediatric tertiary centers. The first article of this thesis focuses on exploring adolescents with JIA perceptions of their ability to teach as a patient educator. It appears that adolescents feel empowered to perform this role primarily because they recognize that they have acquired experiential knowledge by living with their illness. Teens also want to go beyond the MSQp exam teaching and incorporate teaching of their experience of the disease as well as aspects of communication. The importance of integrating these educational messages into the future curriculum to reflect adolescents' visions is discussed. Following the question of 'how' adolescents with juvenile arthritis envisage to be actively involved as patient educators, we then explore in more details 'why' they would 6 like to be part of such a program. Our second article therefore explores the various sources of motivation for adolescents to engage as patient educators through the lens of the self-determination conceptual framework (Ryan & Deci, 2000). Themes associated with intrinsic motivation (helping oneself, experiencing socialization) and extrinsic motivation (advocating for the cause, helping others) are identified. Facilitators and barriers to adolescents' engagement are also explored. The relevance of incorporating these various elements in the program development to ensure an adequate level of participants' commitment is discussed. In our third and final article, we propose a generic framework for curriculum development and evaluation in health sciences based on a review of different models in the broader discipline of program evaluation. We then discuss the application of this framework specifically to the proposed adolescents with juvenile arthritis patient educator program and delineate factors and processes that need to be considered in its creation, implementation, and future evaluation. We conclude with a discussion of this doctoral study's educational implications and development of future lines of research.

Keyphrases: Adolescents, Engagement patient, Adolescents, Juvenile arthritis, Medical education, Patient as teacher, Patient educator, Patient engagement, Patient partner, Program development, Program evaluation