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.

Language:

English

[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

Place as Subject:

United States

Supporting Files:

nihms725892.nxml

text/xml

No Related Documents.

You May Also Like:

Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan

Personal Author:

Birnkrant, David J; Bushby, Katharine; Bann, Carla M; Apkon, Susan D; Blackwell, Angela; Colvin, Mary K; Cripe, Linda; Herron, Adrienne R; Kennedy, Annie; Kinnett, Kathi; Naprawa, James; Noritz, Garey; Poysky, James; Street, Natalie; Trout, Christina J; Weber, David R; Ward, Leanne M;

Corporate Author:

for the DMD Care Considerations Working Group

Published:

Feb 02 2018

Source:

Lancet Neurol. 17(5):445-455.

Description:

Improvements in the function, quality of life, and longevity of patients with Duchenne muscular dystrophy (DMD) have been achieved through a multidisciplinary approach to management across a range of health-care specialties. In part 3 of this update ...

File Type:

[PDF - 596.23 KB]
Using Administrative Data to Ascertain True Cases of Muscular Dystrophy: Rare Disease Surveillance

Personal Author:

Smith, Michael G; Royer, Julie; Mann, Joshua R; McDermott, Suzanne;

Published:

Jan 12 2017

Source:

JMIR Public Health Surveill. 2017; 3(1).

Description:

Background : Administrative records from insurance and hospital discharge data sources are important public health tools to conduct passive surveillance of disease in populations. Identifying rare but catastrophic conditions is a challenge since appr...

File Type:

[PDF - 378.10 KB]
From saving babies to protecting people : NCBDDD making a difference across the lifespan in 2017 : NCBDDD annual report fiscal year 2017

Corporate Author:

National Center on Birth Defects and Developmental Disabilities (Centers for Disease Control and Prevention). Office of the Director.

Published:

2/1/18

Description:

Accessible version available at: https://www.cdc.gov/ncbddd/aboutus/report/index.html : Publication date from document properties. : ncbddd-fiscal-year-2017-annual-report.pdf

File Type:

[PDF - 4.33 MB]
National Center on Birth Defects and Developmental Disabilities annual report, Fiscal Year 2016 : includes special featureon NCBDDD’s Zika virus response

Corporate Author:

National Center on Birth Defects and Developmental Disabilities (Centers for Disease Control and Prevention). Office of the Director.

Published:

1/25/17

Description:

This report documents a year’s accomplishments and forward progress toward our vision in what has been a highly critical year for NCBDDD. A year we remember for many reasons and one that saw NCBDDD do something it has never done before—be at the ...

File Type:

[PDF - 3.57 MB]
Hospitalizations and Emergency Room Visits for Adolescents and Young Adults with Muscular Dystrophy Living in South Carolina

Personal Author:

Mann, Joshua R.; Royer, Julie A.; McDermott, Suzanne; Hardin, James W.; Ozturk, Orgul; Street, Natalie;

Published:

Aug 14 2015

Source:

Muscle Nerve. 52(5):714-721.

Description:

Introduction : Transitioning from adolescence to adulthood can be problematic for individuals with rare disabilities such as muscular dystrophy (MD). : Methods : We identified a cohort of 220 individuals with MD and 440 matched comparison individuals...

File Type:

[PDF - 218.75 KB]