ABSTRACT
Autoimmune and autoinflammatory diseases (AIDs) are a heterogeneous group of diseases. They can occur in childhood and account for significant morbidity and mortality. Transitioning from pediatric to adult healthcare can be difficult for patients and their families. It can interfere with patient follow-up and management, and eventually lead to complications. Although recommendations exist for the successful transition of patients with chronic diseases, few are specifically adapted to children and adults with AIDs (Suris et al., 2015-Solau-Gervais, 2012). The French working group on transition of the rare autoimmune and autoinflammatory diseases presents its reflections and recommendations for a successful transition. Preparation for transition should start early. Its goals are to empower adolescents by providing them with the knowledge to manage their own care, respond appropriately to changes in their condition, and evolve within the adult healthcare system. This requires the active participation of the patient, his or her family, as well as the pediatric and adult medical teams. The transition process involves multidisciplinary care and dedicated therapeutic education programs. Finally, the identification of medical specialists by region, trained in rare AIDs and accompanied by expert patients, may improve the management of patients with rare AIDs from adolescence to adulthood.
Subject(s)
Hereditary Autoinflammatory Diseases , Transition to Adult Care , Adolescent , Adult , Child , Female , Hereditary Autoinflammatory Diseases/diagnosis , Hereditary Autoinflammatory Diseases/epidemiology , Hereditary Autoinflammatory Diseases/therapy , Humans , Male , Rare DiseasesABSTRACT
INTRODUCTION: A dozen innovative care clinics have recently opened in France to support the transition of adolescents with chronic conditions between pediatric and adult healthcare units through various interventions. Some patients' associations have set up specific programs for adolescents and young adults (AYAs) in order to facilitate the transition process, but they are not well-known among healthcare professionals. Our aim was to describe these programs and to evaluate the quality of their implementation and transferability into transition clinics. MATERIEL AND METHODS: We conducted semistructured interviews with representatives of associations that proposed interventions dedicated to AYAs with chronic conditions. We collected quantitative and qualitative data to describe these interventions. Descriptive statistics were run on quantitative data and a thematic analysis of the qualitative data was made. RESULTS: A questionnaire was sent to 55 associations, 19 (36%) of them had established programs and were contacted; interviews were conducted with 16 of them. Thirteen were national associations, 11 focused on a specific chronic disease, three supported multiple chronic conditions, and two were available to any AYA with chronic disease. Programs were mainly camps (n=5; from 2days to 3weeks) and workshops (n=5). Educational considerations and hobbies were more frequently discussed when peers were directly involved in the program. Stakeholders were mainly other patients and peers (9/16). Fourteen out of 16 were perceived as successful (perceived improvement in AYA quality of life and/or positive feedback). Twelve out of 16 associations thought that their program could be transferable to transition clinics and all were interested in collaboration. DISCUSSION: This work highlights five key points to be considered in the clinical care setting before building programs: unique tailoring and customization, complementarity with existing programs in patients' associations, viability based on peer involvement and evaluation, a common main goal, and using transition clinics' assets to direct AYAs towards the most suitable program.
