Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results

Nicole Bitencourt; Erica Lawson; John Bridges; Kristine Carandang; Ela Chintagunta; Peter Chiraseveenuprapund; Kimberly DeQuattro; Y Ingrid Goh; Tzielan C Lee; Katharine F Moore; Rosemary G Peterson; Jordan E Roberts; Tova Ronis; Rebecca E Sadun; Emily A Smitherman; Elizabeth Stringer; Patience H White; Joyce C Chang; Childhood Arthritis and Rheumatology Research Alliance (CARRA) Transition Workgroup

doi:10.3899/jrheum.220262

Pediatric to Adult Transition Literature: Scoping Review and Rheumatology Research Prioritization Survey Results

J Rheumatol. 2022 Nov;49(11):1201-1213. doi: 10.3899/jrheum.220262. Epub 2022 Aug 1.

Authors

Nicole Bitencourt¹, Erica Lawson², John Bridges³, Kristine Carandang⁴, Ela Chintagunta⁵, Peter Chiraseveenuprapund⁶, Kimberly DeQuattro⁷, Y Ingrid Goh⁸, Tzielan C Lee⁹, Katharine F Moore¹⁰, Rosemary G Peterson¹¹, Jordan E Roberts¹², Tova Ronis¹³, Rebecca E Sadun¹⁴, Emily A Smitherman¹⁵, Elizabeth Stringer¹⁶, Patience H White¹⁷, Joyce C Chang¹²; Childhood Arthritis and Rheumatology Research Alliance (CARRA) Transition Workgroup

Affiliations

¹ N. Bitencourt, MD, Department of Pediatrics, Loma Linda University Medical Center, Loma Linda, California, USA; [email protected].
² E. Lawson, MD, Department of Pediatrics, University of California San Francisco Medical Center, San Francisco, California, USA.
³ J. Bridges, MD, MS, Division of Pediatric Rheumatology/Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham, Birmingham, Alabama, USA.
⁴ K. Carandang, PhD, OTR/L, Patients' Autoimmune Research & Empowerment Alliance, University of Wisconsin-River Falls, River Falls, Wisconsin, USA.
⁵ E. Chintagunta, Patient Partner, Childhood Arthritis Rheumatology Research Alliance, Washington, DC, USA.
⁶ P. Chiraseveenuprapund, MD, Department of Pediatrics, Division of Allergy, Immunology, Rheumatology, and Kawasaki Disease, University of California, San Diego, San Diego, California, USA.
⁷ K. DeQuattro, MD, MM, Department of Medicine, Division of Rheumatology, University of Pennsylvania Health Systems, Philadelphia, Pennsylvania, USA.
⁸ Y.I. Goh, PhD, Division of Rheumatology, The Hospital for Sick Children; Child Health Evaluative Services, SickKids Research Institute, Toronto, Ontario, Canada.
⁹ T.C. Lee, MD, Pediatric Rheumatology, Stanford University School of Medicine, Stanford, California, USA.
¹⁰ K.F. Moore, MD, Section of Pediatric Rheumatology, Children's Hospital Colorado, University of Colorado School of Medicine, Aurora, Colorado, USA.
¹¹ R.G. Peterson, MD, MSCE, Department of Pediatrics, Division of Pediatric Rheumatology, Dell Medical School at UT Austin, Austin, Texas, USA.
¹² J.E. Roberts, MD, J.C. Chang, MD, MSCE, Division of Immunology, Department of Pediatrics, Harvard Medical School, Boston Children's Hospital, Boston, Massachusetts, USA.
¹³ T. Ronis, MDCM, Pediatric Rheumatology, Children's National Hospital, Department of Pediatrics, George Washington University, Washington DC, USA.
¹⁴ R.E. Sadun, MD, PhD, Department of Pediatric and Department of Medicine, Duke University Medical Center, Durham, North Carolina, USA.
¹⁵ E.A. Smitherman, MD, MS, Department of Pediatrics, Division of Pediatric Rheumatology, University of Alabama at Birmingham, Birmingham, Alabama, USA.
¹⁶ E. Stringer, MD, MSc, FRCPC, Associate Professor of Pediatrics, IWK Health, Dalhousie University, Halifax, Nova Scotia, Canada.
¹⁷ P.H. White, MD, MA, Got Transition National Center, National Alliance to Advance Adolescent Health, Division of Rheumatology, George Washington University School of Medicine and Health Sciences, Washington, DC, USA.

PMID: 35914787
DOI: 10.3899/jrheum.220262

Abstract

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.

Keywords: pediatric transition to adult care; transfer from pediatric to adult care; transfer to adult care; transferring to adult care; transition to adult care.

Publication types

Review
Research Support, Non-U.S. Gov't

MeSH terms

Caregivers
Child
Humans
Rheumatic Diseases*
Rheumatology* / methods
Surveys and Questionnaires
Transition to Adult Care*
Young Adult