Document Type
Dissertation
Date of Degree
5-18-2026
Keywords
Philip Van der Wees
Abstract
Background: Juvenile Idiopathic Arthritis (JIA) is a chronic rheumatic condition that manifests in childhood and requires life-long and active management of the disease and its associated symptoms. As youths with JIA age and mature into adults, they must transfer from established care with pediatric specialists to adult specialists to receive developmentally appropriate care. During and after the health care transfer, discontinuity of care for individuals with complex health histories can lead to health complications, increased use of emergency services, and increased health care costs. Professional guidelines recommend health care transitions to prepare patients for the eventual transfer to adult care. However, systematic implementation of these services in the U.S. health care system has not been effective. A barrier to the provision of health care transition services is the ambiguous and complex nature of the transition process. One way to address this barrier is to identify specific, prioritized outcomes and outcome measures that are most important. However, in the field of pediatric rheumatology, consensus has not been reached on the most important health care transition outcomes.
Study Objectives: To develop a core health care transition outcomes set, as agreed upon among the key interested groups involved (i.e., young adults [YAs] with JIA, parents/caregivers, and pediatric and adult rheumatology clinicians) to be the most important outcomes and to obtain expert opinions on the feasibility of and next steps for implementing the core health care transition outcome set in real-world settings.
Methods: This exploratory mixed-methods study included a qualitative phase with a literature review and focus group and individual semi-structured interviews with participants from the key interested groups to obtain a comprehensive list of health care transition outcomes and outcome measures. The subsequent quantitative phase included a Delphi study. Data was collected through three online scoring sessions to achieve consensus among participants regarding priority health care transition outcomes and outcome measures. After each scoring round, results were analyzed after each scoring round to assess which outcomes met the prespecified rule for retention and rescoring in subsequent scoring rounds. A healthcare transition core outcome set was generated following the completion of the Delphi study.
Results: In the qualitative phase, four YAs with JIA participated in a focus group and six individuals (one parent/caregiver and five rheumatology clinicians) completed individual semi-structured interviews. Participants discussed their experiences with health care transitions, their definition of a successful health care transition, and reviewed a list of health care transition outcomes generated from a literature search. A total of 54 health care transition outcomes resulted from this phase. 59 associated outcome measures were identified after an open search. In the quantitative phase, 19 participants were enrolled (eight YAs with JIA, four parents/caregivers, three pediatric rheumatology clinicians, and four adult rheumatology clinicians). The final core outcome set included 10 outcomes in the primary tier that encompassed all four aims of the Quadruple Aim framework, including (a) two outcomes for Population Health (“JIA disease activity” and “functional status”), (b) four outcomes for Experience of Care (“knowledge of JIA and medications,” “having continuous access to rheumatology care,” “knowing where and how to get medications,” and “seeing an adult rheumatologist within 12 months of final pediatric visit”), (c) three outcomes for Cost of Care (“having access to medications,” “maintaining health insurance,” and “knowing where to get medical care”), and (d) one outcome for Provider Experience (“rheumatologist ability to communicate clearly with the patient”. For the outcomes included in the core set, two unique outcome measures met the retention criteria for highly relevant outcome measures: Transition Readiness Assessment Questionnaire and the Got Transition—Transition Readiness Assessment for Youth.
Conclusion: The resulting core outcome set developed from this study serves as a starting point for rheumatology clinicians or any other health care professionals establishing health care transition programs or evaluating and improving existing programs for adolescents and YAs with JIA. The core set provides the minimum elements to be incorporated into health care transition programs but also allows for each health care transition plan to be personalized to the patient’s individual needs. Although this study’s results require further validation, this study successfully achieved its research objective by establishing a preliminary core outcome set.
Recommended Citation
Chi, Jennifer Teng, "The Development of a Core Health Care Transition Outcomes Set for Adolescents and Young Adults with Juvenile Idiopathic Arthritis Transitioning from Pediatric to Adult Rheumatology Care and Recommendations for its Implementation" (2026). Doctor of Philosophy in Translational Health Sciences Dissertations. Paper 47.
https://hsrc.himmelfarb.gwu.edu/smhs_crl_dissertations/47
Open Access
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