Authors Examine Health Care Aspects of Transition to Adulthood for Youth with Special Health Care Needs

January 12, 2009

Solutions to improving the preparation for transition [to adulthood] are needed at the patient and family, provider, and health system levels," state the authors of an article published in the January 2009 issue of Pediatrics.

The Title V program of the Social Security Act, administered by the Maternal and Child Health Bureau (MCHB), provides funding for specialized medical services for children with a range of conditions and guidance to states on improving systems of care for children and youth with special health care needs (CYSHCN). MCHB has made the preparation for adulthood one of six core performance outcomes, which together define a high-performing system of care for CYSHCN. Two national surveys have been conducted to assess state and national progress toward meeting core performance outcomes from families' perspectives. The first National Survey of Children with Special Health Care Needs (NS-CYSHCN) was conducted in 2001 and the second in 2005-2006. This article describes changes to the measurement strategy for the transition core outcome since the 2001 survey and reports national results on the transition core outcome and its individual components using the 2005-2006 survey data. The authors also identify factors associated with meeting the core outcome and its components and discuss implications of the results for federal and state planning and policy.

A total of 40,723 interviews with parents of CYSHCN were completed during 2005-2006, including 18,198 with parents of youth with special health care needs (YSHCN) ages 12-17. Parents of children without special health care needs were surveyed for comparison, with a total of 1,862 parents of youth ages 12-17 responding to the entire survey. The transition core outcome was calculated on the basis of the following component measures: parent report of transition-related discussions with their child's health professionals about shifting to adult health professionals, adult health care needs, and health insurance and parent report that the child's health professional usually or always encouraged the child to take responsibility for his or her care. All components were required to meet the overall core outcome.

The authors found that:

  • Overall, 41% of YSHCN met the transition core outcome.
  • Forty-two percent of parents of YSHCN discussed shifting care to an adult health professional, 62% discussed their child's adult health care needs with a health professional, and 34% discussed upcoming changes in health insurance. The majority (78%) of respondents reported that their child's physician or other health professional usually or always encouraged their child to take responsibility for his or her health.
  • Male gender, older age, non-Hispanic black or Hispanic race and ethnicity, not speaking English in the home, and not having a medical home were independently associated with increased odds of not meeting the core outcome.
  • Overall, the rates of meeting the transition core outcome did not significantly differ between YSHCN and the referent sample.

"As in 2001, performance on the transition core outcome trails that of the other MCHB outcome measures," the authors conclude, suggesting that addressing "disparities in transition services is a high priority."

Lotstein DS, Ghandour R, Cash A, et al. 2009. Planning for health care transitions: Results from the 2005-2006 National Survey of Children with Special Health Care Needs. Pediatrics 123(1):e145-e152. Abstract available online.

More information on health care transitions is available from the MCH Library Children and Adolescents with Special Health Care Needs: Knowledge path