Quality Measurement Gaps in Pediatric-To-Adult Health Care Transition in the United States: A Framework to Guide Development of New Measures

Abstract

PurposePediatric-to-adult health care transition (HCT) is a critical component of care for youth and young adults (Y/YA), especially those with chronic conditions. Positive outcomes in population health, patient experience, and utilization of care for Y/YA with chronic conditions have been associated with a structured HCT approach. Despite these outcomes and professional recommendations, few Y/YA receive HCT guidance from providers. Compounding this problem is the lack of attention to HCT quality measurement to stimulate and evaluate practice improvements and ensure accountability in pediatric and adult care. MethodsA multistep process was undertaken to develop a new HCT quality measurement framework and identify existing HCT measures from national databases. Based on an environmental scan, the framework was created, measure gaps identified, and measure concepts proposed to fill these gaps. A multistakeholder advisory committee provided guidance throughout this initiative. ResultsThe HCT measurement framework has 11 domains: one structure domain (health organization characteristics), three process domains (clinician HCT activities, Y/YA/F activities, continuity of care), four outcome domains (population health, utilization/cost/value of care, patient experience, and clinician experience), and three mediator domains (Y/YA/F-centered care, care coordination, and Y/YA/F characteristics). The search yielded 49 potentially relevant measures but only four qualified as directly relevant to HCT. Fifty four HCT measure concepts were proposed to address these shortcomings. DiscussionPediatric-to-adult HCT quality measurement is largely absent in nationally recognized databases. This article provides a comprehensive HCT quality measurement framework, which was used to identify gaps and propose measure concepts as a roadmap for future HCT quality measurement improvements.