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American Academy of Pediatrics
Article

Current Status of Transition Preparation Among Youth With Special Needs in the United States

Margaret A. McManus, Lauren R. Pollack, W. Carl Cooley, Jeanne W. McAllister, Debra Lotstein, Bonnie Strickland and Marie Y. Mann
Pediatrics June 2013, 131 (6) 1090-1097; DOI: https://doi.org/10.1542/peds.2012-3050
Margaret A. McManus
aThe National Alliance to Advance Adolescent Health, Washington, DC;
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Lauren R. Pollack
aThe National Alliance to Advance Adolescent Health, Washington, DC;
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W. Carl Cooley
bThe National Health Care Transition Center, Concord, New Hampshire;
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Jeanne W. McAllister
bThe National Health Care Transition Center, Concord, New Hampshire;
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Debra Lotstein
cThe David Geffen School of Medicine at University of California, Los Angeles, Los Angeles, California; and
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Bonnie Strickland
dMaternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland
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Marie Y. Mann
dMaternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland
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Abstract

OBJECTIVE: To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement.

METHODS: The 2009–2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation.

RESULTS: Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured.

CONCLUSIONS: Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005–2006 National Survey of Children with Special Health Care Needs. The 2011 release of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians clinical recommendations on transition, new transition tools, and the spread of medical home should stimulate future improvements in transition performance.

  • adolescent
  • pediatric transition to adult care
  • special health care needs
  • children with disabilities
  • primary health care
  • patient-centered care
  • self-management
  • Abbreviations:
    ACA —
    Patient Protection and Affordable Care Act
    CI —
    confidence interval
    FPL —
    federal poverty level
    HRSA —
    Health Resources and Services Administration
    MCHB —
    Maternal and Child Health Bureau
    NS-CSHCN —
    National Survey of Children with Special Health Care Needs
    OR —
    odds ratio
    YSHCN —
    youth with special health care needs
    • Accepted March 6, 2013.
    • Copyright © 2013 by the American Academy of Pediatrics

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    Pediatrics
    Vol. 131, Issue 6
    1 Jun 2013
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    Current Status of Transition Preparation Among Youth With Special Needs in the United States
    Margaret A. McManus, Lauren R. Pollack, W. Carl Cooley, Jeanne W. McAllister, Debra Lotstein, Bonnie Strickland, Marie Y. Mann
    Pediatrics Jun 2013, 131 (6) 1090-1097; DOI: 10.1542/peds.2012-3050

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    Current Status of Transition Preparation Among Youth With Special Needs in the United States
    Margaret A. McManus, Lauren R. Pollack, W. Carl Cooley, Jeanne W. McAllister, Debra Lotstein, Bonnie Strickland, Marie Y. Mann
    Pediatrics Jun 2013, 131 (6) 1090-1097; DOI: 10.1542/peds.2012-3050
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    Subjects

    • Children With Special Health Care Needs
      • Children With Special Health Care Needs
    • Adolescent Health/Medicine
      • Transition to Adult Care
      • Adolescent Health/Medicine

    Keywords

    • adolescent
    • pediatric transition to adult care
    • special health care needs
    • children with disabilities
    • primary health care
    • patient-centered care
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