I Bos1, H A Stallinga, B Middel, J B M Kuks, K Wynia. 1. Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands. i.bos@umcg.nl
Abstract
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.
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.
Authors: Kristin M Conway; Emma Ciafaloni; Dennis Matthews; Chris Westfield; Kathy James; Pangaja Paramsothy; Paul A Romitti Journal: Disabil Rehabil Date: 2017-04-11 Impact factor: 3.033
Authors: Matilde Leonardi; Haejung Lee; Nenad Kostanjsek; Arianna Fornari; Alberto Raggi; Andrea Martinuzzi; Manuel Yáñez; Ann-Helene Almborg; Magdalena Fresk; Yanina Besstrashnova; Alexander Shoshmin; Shamyr Sulyvan Castro; Eduardo Santana Cordeiro; Marie Cuenot; Christine Haas; Soraya Maart; Thomas Maribo; Janice Miller; Masahiko Mukaino; Stefanus Snyman; Ulrike Trinks; Heidi Anttila; Jaana Paltamaa; Patricia Saleeby; Lucilla Frattura; Ros Madden; Catherine Sykes; Coen H van Gool; Jakub Hrkal; Miroslav Zvolský; Petra Sládková; Marie Vikdal; Guðrún Auður Harðardóttir; Josephine Foubert; Robert Jakob; Michaela Coenen; Olaf Kraus de Camargo Journal: Int J Environ Res Public Health Date: 2022-09-08 Impact factor: 4.614