MCHB Study Assesses Impact of Autism on Families
February 6, 2009
A Maternal and Child Health Bureau study published in Pediatrics examines the experiences of children with autism spectrum disorder (ASD) and their families. The study reported on the unmet needs of these families in relation to health care and financial, employment, or time problems due to their child's care. Results showed that primary care in a medical home was most likely related to fewer financial burdens on the family.
Article Abstract
Published online December 1, 2008
PEDIATRICS Vol. 122 No. 6 December 2008, pp. e1149-e1158
A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005-2006
Michael D. Kogan, PhDa, Bonnie B. Strickland, PhDa, Stephen J. Blumberg, PhDb, Gopal K. Singh, PhDa, James M. Perrin, MDc and Peter C. van Dyck, MD, MPHa
a Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland
b National Center for Health Statistics, Centers for Disease Control and Prevention, Hyattsville, Maryland
c Harvard Medical School, Cambridge, Massachusetts
OBJECTIVES
We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact.
METHODS
We used the 2005-2006 National Survey of Children With Special Health Care Needs to compare 2088 children with special health care needs, aged 3 to 17 years, reported by their parents to have autism spectrum disorder, with children with special health care needs with "other emotional, developmental, or behavioral problems" (excluding autism spectrum disorder; n = 9534) and 26751 other children with special health care needs. We used weighted logistic regression to examine unmet needs for specific health care and support services, delayed care, no usual care source or personal physician, difficulty receiving referrals, and financial, employment, or time problems because of child's care.
RESULTS
Nationally, an estimated 535000 children have special health care needs and autism spectrum disorder, a prevalence of 86 per 10000 children aged 3 to 17 years. Among children with special health care needs, 5.6% have autism spectrum disorder. Compared with other children with special health care needs without emotional, developmental, or behavioral problems, children with special health care needs with autism spectrum disorder were more likely to have unmet needs for specific health care services, family support services, delayed or foregone care, difficulty receiving referrals, and care that is not family centered. Children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the child's medical care, reduce or stop work because of the child's condition, spend ≥10 hours per week providing or coordinating care, and paid more than $1000 in the previous year for the child's care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home.
CONCLUSIONS
Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with special health care needs. Receipt of primary care in a medical home may reduce these burdens.
