THU0602 Targeting generation z: development and validation of an illustrated transition readiness questionnaire for adolescents with juvenile idiopathic arthritis
Authors: H. Lotfy, M. El Gaafary, N. El Aroussy, D. Mekkawy, Y. Farag, Y. El Miedany
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Objectives</h3> To develop, validate and implement a transition readiness assessment tool to be completed by adolescents living with juvenile idiopathic arthritis. <h3>Methods</h3> Cross sectional, quantitative multicenter study. Patients with juvenile idiopathic arthritis aged 14 years or older were included. The assessment tool, designed to be self-administered, is divided into 4 domains: medical, psychosocial, emotional/cognitive, and academic. The medical domain assesses managing medications, booking appointments, disease literacy, self-management, and organ screening. The psychosocial domain assesses the adolescents’ understanding of information related to adult rights, talking to providers as well as child motivation. Emotional concerns related to transition, self-advocacy skills, and completion of a personal health record. The academic domain assesses whether the adolescent is meeting school graduation requirements, able to verbalise an educational/job training plan and on track with future planning (eg, completed required testing). Items within each domain have equal value (ie, each question on the checklist is worth 1 point) and the sum of points yields the quantifiable assessment of how well patients are performing in each area of their health. Assessment meetings occur monthly when eligible patients are discussed. The questions are supported with illustrations explaining every answer. The tool was available in both paper and electronic formats. The children were also asked to rate the comprehensibility of the questionnaire on 0–10 numeric VAS. Sociodemographic, clinical as well as motivation scores were recorded. <h3>Results</h3> A total of 104 patients participated. The majority of patients (95.8%) understood the questionnaire and completed it correctly, in self-administered modality. Mean comprehensibility score was 9.3±0.2. Mean completion time was 6.2 min, with little or no help (78%). Children from low income families or those who had lower education level for their age needed more help. Internal consistency (Cronbach’s alpha) for each domain score were 0.872, 0.861, 0.892, and 0.884 respectively. Construct validity was demonstrated by testing different hypotheses (p&lt;0.01). <h3>Conclusions</h3> The developed illustrated questionnaire was a valid, patient-centred questionnaire which can be used by the paediatricians/rheumatologists to assess the level of preparedness of adolescents with JIA during planning for adult transition. The questionnaire gives information regarding the adolescents’ ability to make appointments, attend their consultations, understand their treatment and to develop other skills required for transition to adult care. The questionnaire can be used to identify aspects in which the adolescent need education or training to achieve independence in transition-relevant skills. The questionnaire can be used also to set goals for the achievement of skills that will help adolescents manage their health and health care into adulthood. Implementing the questionnaire in the standard practice has the potential to improve transition assessment and support as well as improve health outcomes during healthcare transition for adolescents with inflammatory arthritic conditions. <h3>Disclosure of Interest</h3> None declared