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:

Alternative Title:

J Child Neurol

Personal Author:

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

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.

Subject:

[+]

Pubmed ID:

21954427

Pubmed Central ID:

PMC4605438

Document Type:

Journal Article

Funding:

CC999999/Intramural CDC HHS/United States

Place as Subject:

United States

Collection(s):

CDC Public Access

Main Document Checksum:

[+]

Supporting Files:

nihms725892.nxml

text/xml

No Related Documents.

You May Also Like:

Changes in care coordination and health insurance in the population of US children with muscular dystrophy, 2005–2006 and 2009–2010

Personal Author:

Shing, Jaimie Z; Liu, Tiebin; Valdez, Rodolfo;

Published Date:

December 14 2018

Source:

Int J Care Coord. 21(4):140-152

Description:

Introduction:We aimed to assess changes in care coordination and health insurance coverage among US children with muscular dystrophy.Methods:We used 2005–2006 and 2009–2010 data from the National Survey of Children with Special Health Care Needs....

File Type:

[PDF - 194.57 KB]
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 Authors:

for the DMD Care Considerations Working Group

Published Date:

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]
30-day all-cause readmission rates among a cohort of individuals with rare conditions

Personal Author:

Bennett, Kevin J.; Mann, Joshua R.; Ouyang, Lijing;

Published Date:

September 12 2018

Source:

Disabil Health J. 12(2):203-208

Description:

Background:There is a need to examine health care utilization of individuals with the rare conditions muscular dystrophies, spina bifida, and fragile X syndrome. These individuals have a greater need for health care services, particularly inpatient a...

File Type:

[PDF - 323.43 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 Date:

Jan 12 2017

Source:

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

Description:

BackgroundAdministrative 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 approac...

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 Authors:

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

Published Date:

2/1/18

Description:

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

File Type:

[PDF - 4.33 MB]