Background/Purpose: To date, there is no structured or systematic approach in Belgium for transferring adolescents with juvenile idiopathic arthritis from pediatric rheumatology to an adult rheumatology setting. We explored the impact of a transition program for adolescents with JIA on patient- and parent-related outcomes.

Methods:  Using a one-group pretest-posttest design with a non-equivalent posttest only comparison group, we included literate, Dutch-speaking adolescents (14-16 years of age) with JIA, treated and followed-up at the department of pediatric rheumatology of the University Hospitals of Leuven in the experimental group. The intervention consisted of five key components: introduction of the transition coordinator (TC), focus upon health behavior, adolescent-information day, transfer plan and transfer to adult rheumatology care under the guidance of the TC. The comparison group comprised adolescents aged 17-23 years, who have recently been transferred to the adult rheumatology program without a specific transition program. Outcomes were operationalized in terms of medication adherence (VAS, SHCS-AQ), illness related knowledge (modified PKQ), functional status (CHAQ), health status (PedsQL), global quality of life (LAS), fatigue (MVI-20), and patients’ knowledge (modified PKQ). In parents, we measured promotion of independence (PI Scale), support of autonomy (Autonomy Support Scale), psychological control (Psychological Control Scale), health status (PedsQL for parents) and functional status of their child (CHAQ). A total of 33 patients in the intervention group and 45 patients in the comparison group participated. Overall, 23 patients could be matched with controls on gender, JIA subtype, clinical remission, medication prescription and disease activity with comparison patients. Effect sizes in outcomes of the experimental group were measured at baseline and after transfer to the adult program (longitudinal study). Effect sizes in outcomes between the experimental group and the matched comparison group of patients transferred to the adult program without a specific self-management/transition program were measured (comparative study).

Results: Longitudinal study: A large positive effect was calculated for the improved psychosocial health. A medium positive effect was found in the improvement of quality of life of patients. Medium negative effects were found in improved health status rheumatology, perceived by parents. Comparative study: For patients in the experimental group, a large positive effect was found in reduction of parental expectations. Medium positive effects were found in improved psychosocial health and reduction in behavioral control. Medium negative effects were found in reduction of psychological control.

Conclusion: Implementation of a transition program can improve the psychosocial health and quality of life of adolescents with JIA during the transition process. It is important to involve the parents into the transition process in order to promote self-management of the adolescent with JIA.