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

- Add this to...
- Twitter
- Facebook
- Google Bookmarks
- LinkedIn

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

No Related Documents.

You May Also Like:

Design and operation of the National Survey of Children with Special Health Care Needs, 2001

Personal Author:

Blumberg, Stephen J.

Corporate Author:

National Center for Health Statistics (U.S.)

Published:

June 2003

Series:

Vital and health statistics. no. 41 Series 1 Programs and collection procedures
DHHS publication ; no. (PHS) 2003-1317

Description:

[Stephen J. Blumberg ... et al.] : "June 2003." : Also available via the World Wide Web. : Includes bibliographical references (p. 32-33)

File Type:

[PDF - 3.41 MB]
Design and operation of the National Survey of Children with Special Health Care Needs, 2009–2010

Personal Author:

Bramlett, Matthew D.; Blumberg, Stephen J.; Ormson, A. Elizabet; George, Jacquelyn M.; Williams, Kim L.; Frasier, Alicia M.; Skalland, Benjamin J.; Santos, Kathleen B.; Vsetecka, Danielle M.; Morrison, Heather M.; Pedlow, Steven; Wang, Fang;

Corporate Author:

National Center for Health Statistics (U.S.); National Survey of Children with Special Health Care Needs (U.S.);

Published:

November 2014

Series:

Vital and health statistics. Series 1 Programs and collection procedures ; no. 57
DHHS publication ; no. (PHS) 2015–1333

Description:

Objectives: his report presents the development, plan, and operation of the 2009–2010 National Survey of Children with Special Health Care Needs, a module of the State and Local Area Integrated Telephone Survey. The survey is conducted by the Cente...

File Type:

[PDF - 8.51 MB]
Design and operation of the National Survey of Children with Special Health Care Needs, 2005-2006

Personal Author:

Blumberg, Stephen J.

Corporate Author:

National Center for Health Statistics (U.S.); National Survey of Children with Special Health Care Needs (U.S.);

Published:

December 2008

Series:

Vital and health statistics. Series 1, Programs and collection procedures ; no. 45
DHHS publication ; no. (PHS) 2009-1321

Description:

"Objectives: This report presents the development, plan, and operation of the National Survey of Children with Special Health Care Needs (CSHCN), a module of the State and Local Area Integrated Telephone Survey, conducted by the Centers for Disease C...

File Type:

[PDF - 1.98 MB]
Assessing Systems Quality in a Changing Health Care Environment: The 2009–10 National Survey of Children with Special Health Care Needs

Personal Author:

Strickland, Bonnie B.; Jones, Jessica R.; Newacheck, Paul W.; Bethell, Christina D.; Blumberg, Stephen J.; Kogan, Michael D.;

Published:

Feb 2015

Source:

Matern Child Health J. 19(2):353-361.

Description:

To provide a national, population-based assessment of the quality of the health care system for children and youth with special health care needs using a framework of six health care system quality indicators. 49,242 interviews with parents of childr...

File Type:

[PDF - 204.10 KB]
Design and operation of the National Survey of Adoptive Parents of Children with Special Health Care Needs, 2008

Personal Author:

Bramlett, Matthew D.

Corporate Author:

National Center for Health Statistics (U.S.); National Center for Health Statistics (U.S.), Division of Health Interview Statistics.; NORC (Organization);

Published:

May 2010

Series:

Vital and health statistics. Series 1, Programs and collection procedures ; no. 51
DHHS publication ; no. (PHS) 2010-1327

Description:

"Objective: This report presents the development, plan, and operation of the National Survey of Adoptive Parents of Children with Special Health Care Needs (NSAP-SN), a module of the State and Local Area Integrated Telephone Survey conducted by the C...

File Type:

[PDF - 65.16 MB]