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A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006.
Pediatrics. 2008 Dec; 122(6):e1149-58.Ped

Abstract

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 >or=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.

Authors+Show Affiliations

Maternal and Child Health Bureau, Health Resources and Services Administration, 5600 Fishers Lane, Room 18-41, Rockville, MD 20857, USA. mkogan@hrsa.govNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info availableNo affiliation info available

Pub Type(s)

Comparative Study
Journal Article

Language

eng

PubMed ID

19047216

Citation

Kogan, Michael D., et al. "A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005-2006." Pediatrics, vol. 122, no. 6, 2008, pp. e1149-58.
Kogan MD, Strickland BB, Blumberg SJ, et al. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics. 2008;122(6):e1149-58.
Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M., & van Dyck, P. C. (2008). A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. Pediatrics, 122(6), e1149-58. https://doi.org/10.1542/peds.2008-1057
Kogan MD, et al. A National Profile of the Health Care Experiences and Family Impact of Autism Spectrum Disorder Among Children in the United States, 2005-2006. Pediatrics. 2008;122(6):e1149-58. PubMed PMID: 19047216.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006. AU - Kogan,Michael D, AU - Strickland,Bonnie B, AU - Blumberg,Stephen J, AU - Singh,Gopal K, AU - Perrin,James M, AU - van Dyck,Peter C, PY - 2008/12/3/pubmed PY - 2009/1/16/medline PY - 2008/12/3/entrez SP - e1149 EP - 58 JF - Pediatrics JO - Pediatrics VL - 122 IS - 6 N2 - 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 >or=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. SN - 1098-4275 UR - https://www.unboundmedicine.com/medline/citation/19047216/A_national_profile_of_the_health_care_experiences_and_family_impact_of_autism_spectrum_disorder_among_children_in_the_United_States_2005_2006_ L2 - http://pediatrics.aappublications.org/cgi/pmidlookup?view=long&pmid=19047216 DB - PRIME DP - Unbound Medicine ER -