RT Journal Article
SR Electronic
T1 Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP jrheum.220262
DO 10.3899/jrheum.220262
A1 Nicole Bitencourt
A1 Erica Lawson
A1 John Bridges
A1 Kristine Carandang
A1 Ela Chintagunta
A1 Peter Chiraseveenuprapund
A1 Kimberly DeQuattro
A1 Y. Ingrid  Goh
A1 Tzielan C.  Lee
A1 Katharine F.  Moore
A1 Rosemary G.  Peterson
A1 Jordan E.  Roberts
A1 Tova Ronis
A1 Rebecca E.  Sadun
A1 Emily A.  Smitherman
A1 Elizabeth Stringer
A1 Patience H.  White
A1 Joyce C.  Chang
YR 2022
UL http://www.jrheum.org/content/early/2022/09/11/jrheum.220262.abstract
AB The transition from pediatric to adult care is the focus of growing research. It is important to identify how to direct future research efforts for maximum effect. Our goals were to perform a scoping review of the transition literature, highlight gaps in transition research, and offer stakeholder guidance on the importance and feasibility of research questions designed to fill identified gaps. The transition literature on rheumatic diseases and other common pediatric-onset chronic diseases was grouped and summarized. Based on the findings, a survey was developed and disseminated to pediatric rheumatologists and young adults with rheumatic diseases as well as their caregivers. The transitional care needs of patients, healthcare teams, and caregivers is well described in the literature. While various transition readiness scales exist, no longitudinal posttransfer study confirms their predictive validity. Multiple outcome measures are used alone or in combination to define a successful transition or intervention. Multimodal interventions are most effective at improving transition-related outcomes. How broader health policy affects transition is poorly studied. Research questions that ranked highest for importance and feasibility included those related to identifying and tracking persons with psychosocial vulnerabilities or other risk factors for poor outcomes. Interventions surrounding improving self-efficacy and health literacy were also ranked highly. In contrast to healthcare teams (n = 107), young adults/caregivers (n = 23) prioritized research surrounding improved work, school, or social function. The relevant transition literature is summarized and future research questions prioritized, including the creation of processes to identify and support young adults vulnerable to poor outcomes.