Health care needs of children with down syndrome and impact of health system performance on children and their families

Randall Phelps, Joseph Pinter, Donald Lollar, Joan Guthrie Medlen, Christina D. Bethell

Research output: Contribution to journalArticle

20 Citations (Scopus)

Abstract

Objective: The functional, financial, and social impact on families of children with Down syndrome (DS) in the United States and the role of the US health care system in ameliorating these impacts have not been well characterized. We sought to describe the demographic characteristics and functional difficulties of these children and to determine whether children with DS, compared with children with 'intellectual disability (ID) generally, and compared with other 'children and youth with special health care needs (CYSHCN), are more or less likely to receive health care that meets quality standards related to care coordination and to have their health care service needs met. Methods: This study analyzed data from the 2005-2006 National Survey of Children with Special Health Care Needs (n = 40,723). Children and youth aged 0 to 17 years with special health care need (CYSHCN) who experience DS (n = 395) and/or IDs (n = 4252) were compared with each other and other CYSHCN on a range of functioning, family impact, and health care quality variables using bivariate and multivariate methods. Data were weighted to represent all CYSHCN in the United States. Results: Compared with CYSHCN without DS, children with DS were significantly less likely to receive comprehensive care within a medical home (29.7% vs 47.3%; p <.001). Parents of children with DS were also significantly more likely to cut back or stop work due to their child's health needs (23.5% vs 55.1%; p <.001). Although overall system performance was poorer for children with DS compared with those with ID and no DS after adjustment for family income, prevalence on most aspects of quality of care and family impacts evaluated were similar for these 2 groups. Conclusions: In this study, the families of children with DS, and ID generally, are burdened disproportionately when compared with other CYSHCN, reflecting the combination of impairments intrinsic to DS and ID and impacts of suboptimal medical care coordination and social support.

Original languageEnglish (US)
Pages (from-to)214-220
Number of pages7
JournalJournal of Developmental and Behavioral Pediatrics
Volume33
Issue number3
DOIs
StatePublished - Apr 2012

Fingerprint

Down Syndrome
Delivery of Health Care
Health
Intellectual Disability
Quality of Health Care
Patient-Centered Care
Family Health
Health Services Needs and Demand
Disabled Children
Social Change
Social Support

Keywords

  • disparities
  • Down syndrome

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Developmental and Educational Psychology
  • Psychiatry and Mental health

Cite this

Health care needs of children with down syndrome and impact of health system performance on children and their families. / Phelps, Randall; Pinter, Joseph; Lollar, Donald; Medlen, Joan Guthrie; Bethell, Christina D.

In: Journal of Developmental and Behavioral Pediatrics, Vol. 33, No. 3, 04.2012, p. 214-220.

Research output: Contribution to journalArticle

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abstract = "Objective: The functional, financial, and social impact on families of children with Down syndrome (DS) in the United States and the role of the US health care system in ameliorating these impacts have not been well characterized. We sought to describe the demographic characteristics and functional difficulties of these children and to determine whether children with DS, compared with children with 'intellectual disability (ID) generally, and compared with other 'children and youth with special health care needs (CYSHCN), are more or less likely to receive health care that meets quality standards related to care coordination and to have their health care service needs met. Methods: This study analyzed data from the 2005-2006 National Survey of Children with Special Health Care Needs (n = 40,723). Children and youth aged 0 to 17 years with special health care need (CYSHCN) who experience DS (n = 395) and/or IDs (n = 4252) were compared with each other and other CYSHCN on a range of functioning, family impact, and health care quality variables using bivariate and multivariate methods. Data were weighted to represent all CYSHCN in the United States. Results: Compared with CYSHCN without DS, children with DS were significantly less likely to receive comprehensive care within a medical home (29.7{\%} vs 47.3{\%}; p <.001). Parents of children with DS were also significantly more likely to cut back or stop work due to their child's health needs (23.5{\%} vs 55.1{\%}; p <.001). Although overall system performance was poorer for children with DS compared with those with ID and no DS after adjustment for family income, prevalence on most aspects of quality of care and family impacts evaluated were similar for these 2 groups. Conclusions: In this study, the families of children with DS, and ID generally, are burdened disproportionately when compared with other CYSHCN, reflecting the combination of impairments intrinsic to DS and ID and impacts of suboptimal medical care coordination and social support.",
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