Application of the International Classification of Functioning, Disability and Health System to symptoms of Duchenne and Becker muscular dystrophies

Conway, Kristin M; Ciafaloni, Emma; Matthews, Dennis; Westfield, Chris; James, Kathy; Paramsothy, Pangaja; Romitti, Paul A

doi:10.1080/09638288.2017.1312567

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Application of the International Classification of Functioning, Disability and Health System to symptoms of Duchenne and Becker muscular dystrophies

Published Date:

April 11 2017

Publisher's site:

http://dx.doi.org/10.1080/09638288.2017.1312567 New Site Icon

Source:

Disabil Rehabil. 40(15):1773-1780

Language:

English

[PDF-350.57 KB]

Details:

Personal Authors:

Conway, Kristin M ; Ciafaloni, Emma ; Matthews, Dennis ; Westfield, Chris ; James, Kathy ; ... More ▼

Keywords:

[+]

Pubmed ID:

28395534

Pubmed Central ID:

PMC5636650

Description:

Purpose

Duchenne and Becker muscular dystrophies, collectively referred to as dystrophinopathies, are X-linked recessive diseases that affect dystrophin production resulting in compromised muscle function across multiple systems. The International Classification of Functioning, Disability and Health provides a systematic classification scheme from which body functions affected by a dystrophinopathy can be identified and used to examine functional health.

Materials and Methods

The infrastructure of the Muscular Dystrophy Surveillance, Tracking, and Research network was used to identify commonly affected body functions and link selected functions to clinical surveillance data collected through medical record abstraction.

Results

Seventy-one (24 second-, 41 third- and 7 fourth-level) body function categories were selected via clinician review and consensus. Of these, 15 of 24 retained second-level categories were linked to data elements from the Muscular Dystrophy Surveillance, Tracking, and Research network surveillance database.

Conclusions

Our findings support continued development of a core set of body functions from the International Classification of Functioning, Disability and Health system that are representative of disease progression in dystrophinopathies and the incorporation of these functions in standardized evaluations of functional health and implementation of individualized rehabilitation care plans.

Document Type:

Journal Article

Collection(s):

CDC Public Access

Funding:

U01 DD000392/DD/NCBDD CDC HHS/United States
U01 DD001126/DD/NCBDD CDC HHS/United States
U01 DD000187/DD/NCBDD CDC HHS/United States
U01 DD001123/DD/NCBDD CDC HHS/United States
U01 DD000189/DD/NCBDD CDC HHS/United States
CC999999/ImCDC/Intramural CDC HHS/United States
U01 DD000191/DD/NCBDD CDC HHS/United States
U01 DD001119/DD/NCBDD CDC HHS/United States
U01 DD000190/DD/NCBDD CDC HHS/United States

Main Document Checksum:

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Supporting Files:

nihms872088.nxml

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