Background/Purpose: In young patients with rheumatologic disease, transition from pediatric to adult care is a complex process. Poor transitional care leads to health deterioration, loss to follow-up and increased morbidity. The “best” transition care model remains elusive and is complicated by how effectiveness and/or success of transition programs are defined and measured. In this review, we aimed to identify: 1) outcomes used in rheumatology transition literature to measure a “successful transition”, and 2) tools used to determine these outcomes.

Methods: A systematic review was conducted by adapting a previously published search strategy using OVID Medline and Embase. The search was conducted in duplicate and discrepancies were reconciled. English articles meeting the following criteria were selected: 1) primary study; 2) pediatric-to-adult rheumatology transition program; 3) quantifiable outcomes reported. Of 506 abstracts reviewed, 69 were selected for full text review and 28 met the final inclusion criteria.

Results: Outcomes reported in rheumatology transition literature were divided into categories. The following categories of outcomes were used to measure a “successful transition” among the 28 studies that met the inclusion criteria: transfer completion (13 studies, 46.4%), transition readiness (5 studies, 17.9%), patient satisfaction (9 studies, 32.1%), disease activity/ functional ability (22 studies, 78.6%), and quality of life (10 studies, 35.7%).

Transfer completion was measured by various definitions of attendance at an adult appointment. Transition readiness was measured using 2 tools: SLE Transition Readiness Questionnaire (SLE-TRQ), and Transition Readiness Assessment Questionnaire (TRAQ). Patient satisfaction was measured using 3 tools, with the most frequently used being the “Mind the Gap” instrument. Disease activity/ functional ability was measured using 9 tools, with the most frequently used being the Child Health Assessment Questionnaire (CHAQ). Quality of life was measured using 6 tools, with the most frequently used being the 36-Item Short Form Health Survey (SF-36). Of the tools identified among the 28 studies, 11 were rheumatology-specific and the remaining were not specific to one disease or clinical area.  

Conclusion: This rheumatology transition literature review identified several outcomes and tools used to report transition success and experiences. Variability in outcome measures makes comparisons between studies and between transition programs challenging. There is need for consensus on which outcomes are most meaningful for patients to allow for effectiveness of models to be determined.  

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/systematic-review-of-effectiveness-outcomes-reported-in-rheumatology-transition-literature/