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.
Data and Statistics
National Survey of Children's Health (NSCH). Funded by the Health Resources and Services Administration's (HRSA's) Maternal and Child Health Bureau (MCHB), this survey provides national and state-level data on the physical and emotional health of American children 0 - 17 years old. Information is collected on factors related to the health and well-being of children, including access to and utilization of health care, receipt of care in a medical home, family interactions, parental health, school and after-school experiences, and neighborhood characteristics.
Since 2003, the NSCH has provided both national and state-level prevalence estimates for a variety of child health and health care indicators. MCHB also fielded the National Survey of Children with Special Health Care Needs (NS-CSHCN) in 2001, 2005-2006, and 2009-2010. Its purpose was to assess the prevalence and impact of special health care needs among children and their families in the U.S. The 2016 NSCH underwent significant redesign and administration changes and differs greatly from the prior survey cycles. From 2016 onward, the purpose of the NSCH remains the same, but the two individual surveys were combined into a single survey conducted every year.
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.