Health Care Quality for Children: The Position of Autism Spectrum Disorder

Abstract

Autism spectrum disorder (ASD) is becoming an increasingly prevalent chronic health condition in childhood. Therefore, the quality of health care among children with ASD has gained increased importance for health-care providers and policymakers. As this chapter demonstrates, health-care experiences, quality, and outcomes for children with ASD are poorer than for children with other types of health conditions, likely in part due to the complex nature of ASD and its all-encompassing effect on children and their families. Fewer than one in four children with ASD meet standards of a defined minimum quality of care index, and less than half receive care that meets all or all but one of the core outcomes performance standards defined by the Maternal and Child Health Bureau’s System of Care for Children with Special Health Care Needs. Improvements to ASD care are greatly needed so that children with ASD can attain their full health and developmental potentials.

Technical Methods Appendix

Data were drawn from the 2009–2010 NS-CSHCN and 2007 NSCH public use data files prepared by the Child and Adolescent Health Measurement Initiative through the Data Resource Center for Child and Adolescent Health (National Data Resource Center for Child and Adolescent Health 2012a, b). Both surveys are led and funded by the federal MCHB and administered by the National Center for Health Statistics’ (NCHS) State and Local Area Integrated Telephone Survey Program, using the National Immunization Survey sampling frame. Both surveys’ methods have been previously described (Blumberg et al. 2009; CDC 2011). Random-digit dial telephone interview methods were employed to identify households and children under the age of 18 years. Respondents were a parent or other adult in the household who knew about the child’s health and health care. Interviews were conducted in English, Spanish, and four Asian languages. In both surveys, the five-item CSHCN Screener was used to identify CSHCN based on consequences children with ongoing conditions are expected to experience (Bethell et al. 2002). Both surveys additionally used the following three items to determine ASD status and severity:

• 1. Has a doctor or other health-care provider ever told you that [your child] had autism, Asperger’s disorder, pervasive developmental disorder, or other autism spectrum disorder – ASD?

• 2. Does [your child] currently have autism or ASD?

• 3. Would you describe his/her autism or ASD as mild, moderate, or severe?

Data analyses were limited to the 37,826 CSHCN aged 3–17 years who were sampled in the 2009–2010 NS-CSHCN and the 78,037 children aged 3–17 years from the 2007 NSCH. Estimates from each survey were adjusted by NCHS for nonresponse bias and weighted to represent the noninstitutionalized population of children aged 3–17 years in each state and the District of Columbia, resulting in an estimated 61.6 million US children based on the 2007 NSCH and an estimated 10.2 million US CSHCN based on the 2009–2010 NS-CSHCN. Slight differences in NS-CSHCN and NSCH methods may contribute to discrepancies in CSHCN prevalence estimates as well as the complexity of health and service needs represented among the pediatric populations sampled (Bethell et al. 2008). Missing data on household income, race, ethnicity/language, and highest level of education achieved by parent in the household were imputed by NCHS using multiple-imputation methods (Blumberg et al. 2009; CDC 2011).