RT Journal Article
SR Electronic
T1 Patient-Reported Outcomes among Transition-Age Young Adults with Juvenile Idiopathic Arthritis in the Childhood Arthritis and Rheumatology Research Alliance Registry
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP jrheum.220514
DO 10.3899/jrheum.220514
A1 Emily A.  Smitherman
A1 Rouba A.  Chahine
A1 Nicole Bitencourt
A1 AKM Fazlur  Rahman
A1 Erica F.  Lawson
A1 Joyce C.  Chang
YR 2022
UL http://www.jrheum.org/content/early/2022/09/11/jrheum.220514.abstract
AB Objective To evaluate patient-reported care utilization and outcomes among young adults with juvenile idiopathic arthritis (JIA), including factors associated with completed transfer to adult rheumatology. Methods We included young adults with JIA enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry from 2015-2019 with age ≥ 18 at their last clinical site visit. We utilized data from the CARRA Registry Long-term Follow-up program which follows inactive CARRA Registry patients and collects patient-reported information via phone surveys. We compared the characteristics of respondents with completed and incomplete transfer to adult rheumatology care at their first Long-term Follow-up phone survey. Results We identified 540 young adults with JIA; 187 (35%) responded to the Long-term Follow-up phone survey. The 54% of respondents who had completed transfer to adult rheumatology were slightly older and reported more self-assessed disease activity, morning stiffness, and pain compared to those with incomplete transfer. Biologic use was high at both time points and did not differ by transfer status. Patients who completed transfer were more likely to have private insurance and be actively pursuing post-secondary education compared to those with incomplete transfer. Across the cohort, 65% reported problems with pain or discomfort and 45% with anxiety or depression. Conclusion Young adult respondents with JIA in the CARRA Registry commonly report persistent medication use, but still report more problems with pain as compared to population norms. Additional work is needed to understand how best to address comorbid pain around the period of transition to adult care.