The Maternal and Child Health Bureau (MCHB) Title V Maternal and Child Health Services Block Grants to States Program has established 15 National Performance Measures for the 2015-2017 grant cycle. Performance Measure 12 is the percent of children with and without special health care needs who received services necessary to make transitions to adult health care. This evidence brief points to a selection of resources for state MCH programs about adolescent transition, with emphasis on evidence-based information.
The Title V Maternal and Child Health Services Block Grant to States Program guidance1 defines the significance of this goal as follows:
The transition of youth to adulthood has become a priority issue nationwide as evidenced by the clinical report and algorithm developed jointly by the American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians to improve healthcare transitions for all youth and families. Over 90 percent of children with special health care needs now live to adulthood, but are less likely than their non-disabled peers to complete high school, attend college or to be employed. Health and health care are cited as two of the major barriers to making successful transitions.
Read More about Performance Measure 12
Performance Measure 12
Percent of children with and without special health care needs who received services necessary to make transitions to adult health care
To increase the percent of youth with and without special health care needs who have received the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.
Numerator: Parent report of youth with and without special health care needs, ages 12-17, whose families report that they received the services necessary to transition to adult health care, with subset analyses for children with special health care needs
Denominator: All adolescents, ages 12-17 years
Healthy People 2020 Objectives
Related to Disability and Health (DH) Objective 5: Increase the proportion of youth with special health care needs whose health care provider has discussed transition planning from pediatric to adult health care. (Baseline: 41.2%, Target: 45.3%)
Data Sources and Data Issues
The revised National Survey of Children's Health (NSCH) beginning in 2017. States can use data from the 2011-2012 NSCH as a baseline.
National Survey of Children's Health. This survey includes physical and mental health status, access to quality health care, as well as information on the child's family, neighborhood and social context. Search for state and national data which can be further refined to assess differences by race/ethnicity, income, special health care needs status and a variety of other important demographic and health status characteristics. The survey was conducted in 2003, 2007, and 2011-2012.
National Survey of Children with Special Health Care Needs. This survey assesses the health and functional status of children with special health care needs including physical, emotional and behavioral health, along with information on access to quality health care, care coordination of services, access to a medical home, transition services for youth, and the impact of chronic condition(s) on the child's family. The survey was conducted in 2001, 2005-2006, and 2009-2010.
Got Transition/Center for Health Care Transition. Extensive set of tools and guidance for health care providers for implementing best practices to support the transition from pediatric to adult health care for all youth including those with special health care needs.
Resources for Researchers and Policymakers. Anaylses of transition performance in the United States, publications about the six core elements of transition, literature reviews, validated transition tools, policy statements, practice measurement tools, insurance information focusing on adolescents and young adults, federal transition initiatives, and state transition information.
Health Care Transition Resources. Includes links to resources about other aspects of transition: adult model of care, cultural competence, education, employment, foster care, guardianship and decision-making, health insurance, and much more.
Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. 2012. Health care transition for youth with special health care needs. Journal of Adolescent Health 51(3):213-219. View abstract.
Fegran L, Hall EO, Uhrenfeldt L, Aagaard H, Ludvigsen MS. 2014. Adolescents' and young adults' transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis. International Journal of Nursing Studies 51(1):123-135. View abstract.
Stinson J, Kohut SA, Spiegel L, White M, Gill N, Colbourne G, Sigurdson S, Duffy KW, Tucker L, Stringer E, Hazel B, Hochman J, Reiss J, Kaufman M. 2014. A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness. International Journal of Adolescent Medicine and Health 26(2):159-174. View abstract.
McManus M, White P, Barbour A, Downing B, Hawkins K, Quion N, Tuchman L, Cooley WC, McAllister JW. 2014. Pediatric to adult transition: A quality improvement model for primary care. Journal of Adolescent Health, [published online on October 3, 2014]. View abstract.
1 Health Resources and Services Administration. 2014. Title V Maternal and Child Health Services Block Grant to States Program: Guidance and Forms for the Title V Application/Annual Report, Appendix F, p. 85.