Exploring quality of life in people with ...
Type de document :
Article dans une revue scientifique
PMID :
URL permanente :
Titre :
Exploring quality of life in people with slowly-progressive neuromuscular disease
Auteur(s) :
Dany, Antoine [Auteur]
Rapin, Amandine [Auteur]
Réveillère, Christian [Auteur]
Calmus, Arnaud [Auteur]
Tiffreau, Vincent [Auteur]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369 - ULR 4488 [URePSSS]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369
Morrone, Isabella [Auteur]
Novella, Jean-Luc [Auteur]
Jolly, Damien [Auteur]
Boyer, François-Constant [Auteur]
Rapin, Amandine [Auteur]
Réveillère, Christian [Auteur]
Calmus, Arnaud [Auteur]
Tiffreau, Vincent [Auteur]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369 - ULR 4488 [URePSSS]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369
Morrone, Isabella [Auteur]
Novella, Jean-Luc [Auteur]
Jolly, Damien [Auteur]
Boyer, François-Constant [Auteur]
Titre de la revue :
Disability and rehabilitation
Nom court de la revue :
Disabil. Rehabil.
Numéro :
39
Pagination :
1262-1270
Date de publication :
2017-01-01
ISSN :
0963-8288
Mot(s)-clé(s) en anglais :
qualitative study
quality of life
patient-reported outcome
neuromuscular disease
Focus group
quality of life
patient-reported outcome
neuromuscular disease
Focus group
Discipline(s) HAL :
Sciences du Vivant [q-bio]
Résumé en anglais : [en]
A qualitative work is conducted to enable later the construction of a health-related quality of life (HRQL) questionnaire for patients with slowly-progressive neuromuscular disease (NMD) such as myopathies and muscular ...
Lire la suite >A qualitative work is conducted to enable later the construction of a health-related quality of life (HRQL) questionnaire for patients with slowly-progressive neuromuscular disease (NMD) such as myopathies and muscular dystrophies. The formation of focus groups is an efficient method to perform an in-depth exploration of the aspects of HRQL potentially impaired by NMD. Patients were recruited in France by 4 NMD reference centers. To ensure adequate representativeness in terms of severity, three types of focus groups were formed: (1) Patients able to walk (WP). (2) Patients using a wheelchair (WCP). (3) Patients using a wheelchair and requiring continuous mechanical ventilation (WCMVP). All verbal interactions among group participants were recorded. A qualitative analysis of the verbatim was performed using the framework of the International Classification of Functioning, Disability and Health model (ICF). A total of 41 patients distributed across five focus groups were interviewed. The verbatim provided 2424 ICF categories. The percentages of mentions of the different ICF categories were calculated and graphically displayed. The results enabled to identify and quantify the aspects of life that are altered by NMD according to patients. This qualitative work was the first phase of a more ambitious project to develop a new NMD-specific HRQL questionnaire. Implication of rehabilitation Patients with NMD have more to say about the quality of their environment, their social relationships and their psychological state than about their physical symptoms. This observation should be compared to clinician perceptions which often focus mainly on the physical symptoms, overlooking those elements that they cannot assess directly. Many patients reported relationship issues with various people from their surrounding (e.g., health professionals, acquaintances, colleagues, and strangers). In particular, it is essential that health professionals are careful not to make adult patients with NMD feel infantilized. This issue can be addressed by making all relevant medical information available and asking for the patient's opinion on any important change in their medical care.Lire moins >
Lire la suite >A qualitative work is conducted to enable later the construction of a health-related quality of life (HRQL) questionnaire for patients with slowly-progressive neuromuscular disease (NMD) such as myopathies and muscular dystrophies. The formation of focus groups is an efficient method to perform an in-depth exploration of the aspects of HRQL potentially impaired by NMD. Patients were recruited in France by 4 NMD reference centers. To ensure adequate representativeness in terms of severity, three types of focus groups were formed: (1) Patients able to walk (WP). (2) Patients using a wheelchair (WCP). (3) Patients using a wheelchair and requiring continuous mechanical ventilation (WCMVP). All verbal interactions among group participants were recorded. A qualitative analysis of the verbatim was performed using the framework of the International Classification of Functioning, Disability and Health model (ICF). A total of 41 patients distributed across five focus groups were interviewed. The verbatim provided 2424 ICF categories. The percentages of mentions of the different ICF categories were calculated and graphically displayed. The results enabled to identify and quantify the aspects of life that are altered by NMD according to patients. This qualitative work was the first phase of a more ambitious project to develop a new NMD-specific HRQL questionnaire. Implication of rehabilitation Patients with NMD have more to say about the quality of their environment, their social relationships and their psychological state than about their physical symptoms. This observation should be compared to clinician perceptions which often focus mainly on the physical symptoms, overlooking those elements that they cannot assess directly. Many patients reported relationship issues with various people from their surrounding (e.g., health professionals, acquaintances, colleagues, and strangers). In particular, it is essential that health professionals are careful not to make adult patients with NMD feel infantilized. This issue can be addressed by making all relevant medical information available and asking for the patient's opinion on any important change in their medical care.Lire moins >
Langue :
Anglais
Audience :
Internationale
Vulgarisation :
Non
Établissement(s) :
Univ. Littoral Côte d’Opale
Univ. Artois
Université de Lille
Univ. Artois
Université de Lille
Équipe(s) de recherche :
Activité Physique, Muscle, Santé (APMS)
Date de dépôt :
2019-09-24T10:01:25Z