[Transition: between recommendations and real-world care : Results from the InfoTrans project].

BACKGROUND

The transition from pediatric to adult rheumatology care represents a particular challenge for young people with juvenile idiopathic arthritis (JIA).

OBJECTIVES

To investigate the continuity of care, disease burden, transition competence and unmet needs among young adults with JIA.

MATERIAL AND

METHODS

Within the Innovation Fund project InfoTrans, a cross-sectional survey was conducted among- individuals insured with the Barmer health insurance aged 16-25 years with JIA and pseudonymously linked with health insurance claims data. For the present analysis, young adults aged 20 years and older with prior pediatric rheumatology care were included. Data collected comprised current healthcare utilization, patient-reported outcomes, transition competence (Transitions-KompAZ), and psychological well-being (WHO-5).

RESULTS

Among 269 surveyed young adults with JIA, 45% were receiving specialist rheumatology care. Participants receiving rheumatology care showed higher transition competence (22.7 vs. 19.0; p < 0.001), had more frequently attended a transition consultation (17% vs. 9%), and were more often aware of the website "mein-rheuma-wird-erwachsen.de" (33% vs. 20%; p = 0.013). Despite comparable disease burden, participants without specialist care received DMARD therapy less frequently (18% vs. 63%). Gaps in care were also observed among participants receiving rheumatology care: the average interval between the last pediatric rheumatology and first adult rheumatology visit was 9.9 months. Overall, 35% had not received a medical transfer summary report, more than 40% were dissatisfied with preparation for transfer, and approximately 1 in 5 participants reported relevant depressive symptoms.

CONCLUSION

Relevant discrepancies remain between recommendations for structured transitional care and actual care delivery. Disease-related knowledge appears to be a central factor for continuous follow-up in rheumatology. The findings underline the importance of early patient education and better integration of support services.