The clinical impact of a brief transition programme for young people with juvenile idiopathic arthritis: results of the DON'T RETARD project

Abstract

Objective: To investigate the clinical impact of a brief transition programme for young people with JIA.

Methods: The Devices for Optimization of Transfer and Transition of Adolescents with Rheumatic Disorders (DON'T RETARD) project is a mixed method project in which we first conducted a quasi-experimental study employing a one-group pre-test-post-test with a non-equivalent post-test-only comparison group design. In this quantitative study, we investigated clinical outcomes in patients with JIA and their parents who participated in the transition programme (longitudinal analyses). The post-test scores of this intervention group were compared with those of patients who received usual care (comparative analyses). Second, a qualitative study was conducted to explore the experiences of adolescents with JIA and their parents regarding their participation in the transition programme.

Results: The primary hypothesis of improved physical (effect size 0.11), psychosocial (effect size 0.46) and rheumatic-specific health status (effect size ranging from 0.21 to 0.33), was confirmed. With respect to the secondary outcomes, improved quality of life (effect size 0.51) and an optimized parenting climate (effect size ranging from 0.21 to 0.28) were observed. No effect was measured in medication adherence (odds ratio 1.46).

Conclusion: Implementation of a transition programme as a brief intervention can improve the perceived health and quality of life of adolescents with JIA during the transition process, as well as the parenting behaviours of their parents. Based on the present study, a randomized controlled trial can be designed to evaluate the effectiveness of the transition programme.

Keywords: brief transition programme; juvenile idiopathic arthritis; mixed methods; results; transition to adult care.