Transition Planning for Youth With Special Health Care Needs: Results From the National Survey of Children With Special Health Care Needs

  • Lotstein D
  • Mcpherson M
  • Strickland B
 et al. 
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Objective. To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care–related factors are associated with receiving transition services. Methods. We analyzed responses to questions about medical transitions from the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN). Parents or guardians of youth aged 13 to 17 years who screened positive for the survey were asked (1) whether they had discussed with health care providers how their child's health care needs might change in adulthood, (2) if they had a plan to address these changing needs, and (3) if their child's health care providers had discussed having their child eventually see a doctor who treats adults. Bivariate and multivariate associations were esti-mated to identify sociodemographic and health care fac-tors related to receiving medical-transition services. Results. Overall, 50% of respondents had discussed their child's changing health care needs with their phy-sicians, although significantly fewer Hispanic youth compared with other youth reported these discussions. Youth who met criteria for a medical home were more likely to have discussed changing needs and to have a plan addressing these needs. Of those who had discussed changing needs, 59% had a plan to address these needs and ϳ42% had reported discussing shifting care to adult-oriented providers. Younger teens and non-Hispanic black children were less likely to have discussed chang-ing providers. Fifteen percent of YSHCN met the Mater-nal and Child Health Bureau's core outcome for medical transitions. A multivariate logistic-regression model found that older age and having a medical home were significantly associated with increased odds of meeting the outcome measure. Conclusion. The proportion of YSHCN meeting the medical-transition outcome measure is quite low, partic-ularly for youth from ethnic minorities. Higher rates are seen for older teens and those receiving care within a medical home. Significant efforts will be required to meet the proposed goal of all YSHCN receiving the ser-vices necessary to transition to adult health care. Pediat-rics 2005;115:1562–1568; adolescents, special needs, transi-tion to adulthood. ABBREVIATIONS. YSHCN, youth with special health care needs; NS-CSHCN, National Survey of Children With Special Health Care Needs; MCHB, Maternal and Child Health Bureau; CSHCN, children with special health care needs; NCHS, National Center for Health Statistics. O ver the last 20 years, researchers, government agencies, and health care providers have fo-cused attention on improving health care and related services to children with special health care needs (CSHCN). According to the Maternal and Child Health Bureau (MCHB), CSHCN are those who " have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. " 1 This definition is based on the degree of health care utilization rather than disease classification and includes children with conditions of varying sever-ity, those with and without developmental impair-ment, and those with and without activity limita-tions. This population is significant in terms of its size and relationship to the health care system. It includes Ͼ9 million children, or nearly 13% of US children. 2 Children with chronic conditions account for a disproportionate share of health care expendi-tures. 3,4 In addition, this population is vulnerable in terms of their dependence on uninterrupted medical care for their health and well-being. Thus, under-standing gaps in access and quality of care to this population is especially important. A newly recognized gap in the care for CSHCN has resulted from the changing epidemiology of this population. As a result of early detection, advances in medical treatment strategies, and improved health service systems, the vast majority of children with chronic conditions will survive into adulthood. Based on recent estimates, ϳ500 000 youth with spe-cial health care needs (YSHCN) will turn 18 each year. 5 Consequently, there is a growing need to focus on the well-being and health care access of young adults with chronic childhood conditions. Although many YSHCN may move smoothly into adulthood, others will face difficulties, especially in

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  • Debra S Lotstein

  • Merle Mcpherson

  • Bonnie Strickland

  • Paul W Newacheck

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