Improving Health Care Transitions for Children and Youth With Special Health Care Needs

Authors

Megumi J. Okumura, University of California, San Francisco, Divisions of General Pediatrics, General Internal Medicine and Philip R. Lee Institute for Health Policy Studies (MJ Okumura), San Francisco, Calif. Electronic address: megumi.okumura@ucsf.edu.
Dennis Z. Kuo, University at Buffalo, Division of General Pediatrics, Division of Developmental Pediatrics & Rehabilitation (DZ Kuo), Buffalo, NY.
Allysa N. Ware, Family Voices (A Ware), Lexington, Mass.
Mallory H. Cyr, Healthcare Transition Consultant, Mallory Cyr, LLC (MH Cyr), Denver, Colo.
Patience H. White, George Washington University School of Medicine and Health Sciences, The National Alliance to Advance Adolescent Health (P White), Washington, DC.

Document Type

Journal Article

Publication Date

3-1-2022

Journal

Academic pediatrics

Volume

22

Issue

2S

DOI

10.1016/j.acap.2021.03.014

Keywords

Transition from Pediatric to Adult Health Care; families; patients; research agenda; stakeholder engagement

Abstract

Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.

APA Citation

Okumura, Megumi J.; Kuo, Dennis Z.; Ware, Allysa N.; Cyr, Mallory H.; and White, Patience H., "Improving Health Care Transitions for Children and Youth With Special Health Care Needs" (2022). GW Authored Works. Paper 645.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/645

Department

Medicine