Background/Purpose: The transition from pediatric to adult rheumatology care is associated with increased disease activity and morbidity for patients with rheumatic disease. Consequently, there has been increasing focus on transitional programs involving multidisciplinary teams to improve self-management skills and other transition-related outcomes. Unfortunately, there is a lack of research surrounding the final stage of transition that occurs immediately after patients transition to adult care. Thus, our study aimed to characterize healthcare self-management skills and assess how transition readiness may compare pre-transfer to adult care to post-transfer in a cohort of youth who were seen in a multidisciplinary rheumatology transition program.

Methods: Youth aged 17-18 years old with JIA or jSLE were recruited in our multidisciplinary pediatric rheumatology transition clinic and followed after they transitioned to adult care at age 18. Upon transfer to adult care, patients are seen by an adult rheumatologist and an Advanced Clinical Practitioner in Arthritis Care (ACPAC) physiotherapist who sets goals and coaches patients on self-management skills and strategies. Prior to and after the transfer to adult care, all patients completed the TRANSITION-Q, a 14-item, validated, self-administered questionnaire assessing healthcare self-management skills where higher scores (max. 100) indicate greater transition readiness. Total scores and frequencies of responses to each question (“never”, “sometimes” or “always”) were recorded, and a paired t-test determined compared the pre- to post-transfer scores.

Results: Of 33 patients (n=27 female, n=25 JIA), the means (SD) and ranges of TRANSITION-Q scores prior to compared to post-transfer to adult care were 68.0 (13.4, range 38-92) versus 83.5 (15.6, range 48-100) (p< 0.01). Total TRANSITION-Q scores increased in 31 (94%) patients. Domains where the greatest number of patients improved pertained to traveling to doctors appointments on their own, contacting the doctor when they need to, booking their own doctor’s appointments, and seeing the doctor on their own.

Conclusion: Youth in our transition clinic show improved self-management skills after transitioning to adult care as shown by increases in TRANSITION-Q scores. Notably, TRANSITION-Q scores prior to transfer reveal that patients generally have considerable room for improvement in self-management skills suggesting that they can benefit from support even after transfer. While reasons for improvement are likely multifactorial and related to our transition program and patient maturation, the involvement of the ACPAC physiotherapist who works individually with each patient after transfer to adult care to set goals for improvement likely plays a key role. Future work will involve increasing our sample size and comparing with patients who did not have access to an ACPAC after transfer.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/transition-readiness-before-versus-after-adolescents-with-rheumatic-disease-transition-to-adult-care/