Ab1729 Development of a Transition Patient Education Programme for Adolescents With Juvenile Idiopathic Arthritis

Background: The transition is a key moment in the management of patients with juvenile idiopathic arthritis (JIA). However, despite the advances that have been made to facilitate this crucial period, too many patients are still being lost 1. Patient education (PE) is one of the tools to help patients and caregivers during this transition from paediatric to adult rheumatology. Objectives: The aim of this study was to explore the expectations of adolescents with JIA and their caregivers, with a view to developing a PE workshop tailored to their needs when they arrive on the adult rheumatology department. Methods: A questionnaire was emailed to patients from a single-centre retrospective cohort of JIA patients at the time of transition to adult rheumatology and to their parents. Results: A total of 70 individuals responded to the survey, 46 patients and 24 caregivers. 65% of the patient were aged between 18 and 25 years, 9% were aged between 15 and 18 years, and 26% were aged over 25 years. The main difficulties experienced by patients and caregivers during the transition were changing doctors (44%-29%) and insufficient information (36%-29%). Over 28% of respondents reported no difficulties. 15% of patients had already attended a PE transition workshop. Among the topics that patients would like to discuss in PE, the evolution of the disease was mentioned by 91% of patients, 67% would like to talk about the psychological impact of the disease, 64% about treatments, 69% about the origin of the disease, 56% about diet, 47% about sports and over 30% about the professional/academic world and sexuality. Among parents, 82% would like to discuss the course of the disease and treatments, 52% the psychological impact of the disease and less than 30% other topics. For both patients and parents, the most popular PE programme methods were: a dedicated application or website (56%-61%), one-to-one interviews (36%-39%), face-to-face group meetings (36%-26%), virtual group meetings (29%-39%) and escape games (29%-0%). The presence of an expert patient was considered important by almost 66% of patients and 55% of parents. Finally, 48% of patients would like to have a moment alone and a moment with their parent(s) during the PE workshop. Conclusion: This study, which is still ongoing, has highlighted the various domains of interest to be addressed, as well as the PE workshop methods desired by patients and caregivers. The progression of the disease, its psychological impact and the presence of an expert patient seem to be essential elements to be included in the transition PE workshops. REFERENCES: 1 Luque Ramos A, Hoffmann F, Albrecht K, Klotsche J, Zink A, Minden K. Transition to adult rheumatology care is necessary to maintain DMARD therapy in young people with juvenile idiopathic arthritis. Semin Arthritis Rheum. oct 2017;47(2):269-75. Acknowledgements: NIL. Disclosure of Interests: Sophie Hecquet UCB, BMS, Galapagos, Marion Thomas: None declared, Alice Combier: None declared, Julien Wipff: None declared, Gertrude Touanga: None declared, Pierre Quartier: None declared, Yannick Allanore: None declared.