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European Journal of Physical and Rehabilitation Medicine 2013 April;49(2):179-87

Copyright © 2013 EDIZIONI MINERVA MEDICA

language: English

Validation of the ICF core set for neuromuscular diseases

Bos I. 1, Stallinga H. A. 2, Middel B. 3, Kuks J. B. M. 1, Wynia K. 1, 3

1 Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands; 2 Wenckebach Institute, School of Nursing and Health, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands; 3 Department of Health Sciences, Community and Occupational Medicine, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands


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Background: Understanding of the consequences of a neuromuscular disease (NMD) can improve when a valid sample of disease-specific categories based on the International Classification of Functioning, Disabilities, and Health (ICF) is available.
Objective: To examine the content validity of the initial ICF Core Set for neuromuscular diseases (NMDs). The initial ICF Core Set was developed for three chronic neurological diseases.
Design: A qualitative method.
Methods: To examine the content validity of the initial ICF Core Set for NMD, concepts in established disease-specific health-related Quality of Life Questionnaires (HRQOL) were compared with ICF categories. Next, the selected ICF categories were linked to the ICF categories in the initial ICF Core Set.
Results: All concepts in the HRQOL questionnaires, except one body function concept, were covered by the initial ICF Core Set. However, the NMD Core Set reflects a broader scope concerning health problems than the concepts in the HRQOL questionnaires do, especially concerning the “Participation” and “Environmental Factors” components.
Conclusion: The NMD Core Set, as well as a measurement based on this Core Set, can contribute to a better understanding of the consequences of NMDs and can also serve as a basis for clinical practice, research, social security systems, and educational programs.
Clinical rehabilitation impact: The newly developed NMD Core Set can be a basis for enhancing the development of rehabilitation interventions and improving overall health care for patients with a NMD.

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