Transition to Adulthood

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.

Significance

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

Goal

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.

Definition

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

Units: 100

Text: Percent

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

  • Data Resource Center for Child and Adolescent Health (DRC). Tools for searching and comparing data from the National Survey of Children's Health and the National Survey of Children with Special Health Care Needs. Browse national and state findings on hundreds of child health indicators, or download state snapshot profiles. See the chart, MCHB Core Outcome #6: CSHCN youth receive services needed for transition to adulthood from the 2009/10 National Survey of Children with Special Health Care Needs. To find earlier data, type transition in the Keyword Search box and click on Go.

    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.
  • Healthy People 2020: Disability and Health. One objective addresses transition:

    DH-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.
  • Federal Interagency Forum on Child and Family Statistics. 2014. America's young adults: Special issue, 2014. Washington, DC: U.S. Government Printing Office.
  • McManus MA, Pollacka LR, Cooley WC, McAllister JW, Lotstein D, Strickland B, Mann MY. 2013. Current status of transition preparation among youth with special needs in the United States. Pediatrics 131(6): 1090-1097.

Key Websites

Policy Recommendations

Interventions

  • 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.
  • McPheeters M, Davis AM, Taylor JL, Brown RF, Potter SA, Epstein RA. 2014. Transition care for children with special health needs. Rockville, MD: U.S. Agency for Healthcare Research and Quality, Effective Health Care Program.
  • 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.
  • Vanderbilt Evidence-Based Practice Center. 2012. Intervention for adolescents and young adults with autism spectrum disorders. Rockville, MD: U.S. Agency for Healthcare Research and Quality. (Comparative effectiveness review; no. 65).

Further Reading

Related NCEMCH Resources


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.


Transition: Evidence Brief, 1st ed. (November 2014).

Author: Susan Brune Lorenzo, M.L.S., with contributions from Jolene Bertness, M.Ed., CHES, Beth DeFrancis, M.L.S., Olivia K. Pickett, M.A., M.L.S., NCEMCH