The majority of patients with juvenile idiopathic arthritis (JIA) need specialized care when they enter adulthood. An increasing number of these patients take biologic disease modifying antirheumatic drugs (DMARDs) at the time of transition. The biologic register BiKeR provides information about the health status and healthcare situation of JIA patients during childhood and adolescence and with their entrance into adulthood these patients are systematically transferred to JuMBO, the follow-up register for young adults with JIA treated with biologics and nonbiologic DMARDs.
The aim of this study was to investigate the healthcare situation of patients with JIA during transition from pediatric to adult care.
The current analyses included patients who were successfully transferred from the BiKeR to JuMBO registers. The DMARD treatment and patient-reported outcome (i.e. disease activity, pain and functional ability) were assessed at the last documentation in BikeR and at the first as well as the last documentation in JuMBO.
During the transition period 1 in 10 JIA patients stopped DMARD therapy and 1 in 20 patients did not visit a physician for adults. Three-quarters of the adult JIA patients included in JuMBO (N = 811) reached adult rheumatology care. Adult rheumatologists usually continued therapy with biologics in these patients. Every second patient was still being treated with etanercept, 5 years after the start of the first treatment with biologics. Adult rheumatologists changed the biologic substance in every fourth patient, mainly because of treatment failure. In comparison to patients in regular adult rheumatology care, those who did not remain in specialized care had a higher discontinuation rate of biologics. Moreover, patients with sporadic use of medical care had a significantly poorer health status than those with a regular use of medical care at least every 6 months.
The data show that there is a need for improving healthcare during the period of transition from pediatric to adult rheumatology.