Office of Epidemiology and Research, Division of Research

Advancing Applied MCH Research

A Health Care Transition Randomized Trial for Minority Youth with Special Health Care Needs

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Project Number: R40 MC 23627
Grantee: Children's Research Institute
Department/Center: Clinical and Community/Adolescent and Young Adult Medicine
Project Date: 2/1/2012

Final Report


Principal Investigator

Lisa Tuchman, MD, MPH
Assistant Professor
111 Michigan Avenue NW
Washington, DC  20010-2916
Phone: 202.476.6481


  • Young Adulthood (19-25 years)


  • African American


Special opportunities exist in vulnerable populations with chronic conditions to better understand what life course factors can facilitate attainment of optimal health and development. One such opportunity arises in the life of an adolescent or young adult when they transition their care from pediatric to adult health providers and systems, referred to as "health care transition." Experts generally agree that health care transition is often unsuccessful and associated with a variety of adverse outcomes. Adverse outcomes of unsuccessful health care transition include foregone or delayed medical care and having no identified adult medical home after leaving pediatrics. This foregone and delayed care can result in potentially preventable costly utilization of hospital emergency and inpatient services. Particularly concerning is increasing evidence that for some youth, transition from pediatric to adult medical care is a high-risk period for mortality. In addition to the adverse effects on individuals, unsuccessful health care transition also likely has economic consequences, particularly given that the majority of health care spending is already allotted to individuals with chronic conditions. These problems are even greater for low income and minority youth, with the District of Columbia having the highest level of unmet transition needs in the U.S. In light of these facts, it becomes urgent to implement recommended standards for health care transition and evaluate their impact on transition outcomes. The proposed research will quantify the impact of recommended health care transition practices using a randomized trial design and analysis following the intention-to-treat paradigm. We will do so by comparing aspects of 1) health care transition effectiveness (i.e., care coordination, timing, and services received); 2) experience of care (i.e., satisfaction and quality of chronic illness care); and 3) health care utilization in a population of 18-22 year-old African-American adolescents with special health care needs, receiving primary care in a DC urban academic adolescent medicinepractice, using standardized outcome measures. Half of participants will receive usual care enhanced by written transition information, and half of whom will receive a health care transition intervention modeled on the joint American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians best practices report, released July 2011 that identified six recommended core components for transition programs. These include both practice based components (i.e. written transition policy, transitioning youth registry, and transfer of care) and patient level components (i.e. transition planning and completion). This report makes available an important standard for establishing transition practices but also demands careful evaluation. In doing so, we will address MCHB Strategic Research Issue #I (Public health service systems and infrastructures at the community, state and/or national levels, as they apply to different MCH populations). By implementing these best practices and recommended services within our minority adolescent clinic population, we address MCHB Strategic Research Issue #III (Services and systems to assure quality of care for MCH populations) and MCHB Strategic Research Issue #IV (Promoting the healthy development of MCH populations).


Listed is descending order by year published.

Schwartz LA, Daniel LC, Brumley LD, Barakat LP, Wesley KM, Tuchman LK. Measures of readiness to transition to adult health care for youth with chronic physical health conditions: a systematic review and recommendations for measurement testing and development. J Pediatr Psychol. 2014 Jul;39(6):588-601. doi: 10.1093/jpepsy/jsu028. Epub 2014 Jun 1. PubMed PMID: 24891440; PubMed Central PMCID: PMC4061604.

Tuchman L, Schwartz M. Health outcomes associated with transition from pediatric to adult cystic fibrosis care. Pediatrics. 2013 Nov;132(5):847-53. doi: 10.1542/peds.2013-1463. Epub 2013 Oct 21. PubMed PMID: 24144711.


Access to Health Care, Chronic Illness, Coordination of Services, Developmental Disabilities, YSHCN Transition to Adulthood, Health Disparities, Medical Home, Special Health Care Needs, Health Care Quality

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