A National Profile of Health Care and Family Impacts of Children With Muscular Dystrophy and Special Health Care Needs in the United States

Ouyang, Lijing; Grosse, Scott D.; Fox, Michael H.; Bolen, Julie

doi:10.1177/0883073811420719

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A National Profile of Health Care and Family Impacts of Children With Muscular Dystrophy and Special Health Care Needs in the United States

Published Date:

Sep 27 2011

Publisher's site:

http://dx.doi.org/10.1177/0883073811420719 New Site Icon

Source:

J Child Neurol. 27(5):569-576.

[PDF-246.83 KB]

Details:

Personal Authors:

Ouyang, Lijing ; Grosse, Scott D. ; Fox, Michael H. ; Bolen, Julie ;

Keywords:

[+]

Pubmed ID:

21954427

Pubmed Central ID:

PMC4605438

Description:

We used the 2005-2006 National Survey of Children with Special Health Care Needs to compare 3 types of outcomes between children with and those without parental reported muscular dystrophy: (1) functional limitations; (2) health care experiences in terms of the 5 components of a medical home; and (3) family impacts, including financial or out-of-pocket costs and parental employment and time use. We used weighted logistic regression to examine their associations with muscular dystrophy after adjustment for socio-demographic characteristics. Among children with special health care needs, children with reported muscular dystrophy were much more likely to have difficulties with ambulation and self-care. They were more likely to have family members who reported financial problems, reduced or stopped employment, and spent more than 10 hours weekly providing or coordinating care. Muscular dystrophy was not associated with the likelihood of having a medical home after adjustment for socioeconomic status and other socio-demographic characteristics.

Document Type:

Journal Article

Collection(s):

CDC Public Access

Funding:

CC999999/Intramural CDC HHS/United States

Supporting Files:

nihms725892.nxml

application/octet-stream

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