title: Exploring quality of life in people with slowly-progressive neuromuscular disease.
abstract: 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.
authors.affiliation: a EA 3797, Department of Public Health , University of Reims Champagne-Ardenne , Reims , France.|b Department of Physical Medicine and rehabilitation , Reims University Hospital , Reims , France.
authors.forename: Antoine
authors.initials: A
authors.lastname: Dany
authors.affiliation: b Department of Physical Medicine and rehabilitation , Reims University Hospital , Reims , France.
authors.forename: Amandine
authors.initials: A
authors.lastname: Rapin
authors.affiliation: c Henri Mondor Hospital , Créteil , France.
authors.forename: Christian
authors.initials: C
authors.lastname: Réveillère
authors.affiliation: a EA 3797, Department of Public Health , University of Reims Champagne-Ardenne , Reims , France.|b Department of Physical Medicine and rehabilitation , Reims University Hospital , Reims , France.
authors.forename: Arnaud
authors.initials: A
authors.lastname: Calmus
authors.affiliation: d Swynghedauw Hospital , Lille , France.
authors.forename: Vincent
authors.initials: V
authors.lastname: Tiffreau
authors.affiliation: a EA 3797, Department of Public Health , University of Reims Champagne-Ardenne , Reims , France.|b Department of Physical Medicine and rehabilitation , Reims University Hospital , Reims , France.
authors.forename: Isabella
authors.initials: I
authors.lastname: Morrone
authors.affiliation: a EA 3797, Department of Public Health , University of Reims Champagne-Ardenne , Reims , France.|b Department of Physical Medicine and rehabilitation , Reims University Hospital , Reims , France.
authors.forename: Jean-Luc
authors.initials: JL
authors.lastname: Novella
authors.affiliation: a EA 3797, Department of Public Health , University of Reims Champagne-Ardenne , Reims , France.|b Department of Physical Medicine and rehabilitation , Reims University Hospital , Reims , France.
authors.forename: Damien
authors.initials: D
authors.lastname: Jolly
authors.affiliation: a EA 3797, Department of Public Health , University of Reims Champagne-Ardenne , Reims , France.|b Department of Physical Medicine and rehabilitation , Reims University Hospital , Reims , France.
authors.forename: François Constant
authors.initials: FC
authors.lastname: Boyer
mesh_terms: D000328:Adult; D006233:Persons with Disabilities / Q000534:rehabilitation*; D018450:Disease Progression; D005260:Female; D017144:Focus Groups; D005602:France; D006801:Humans; D064702:International Classification of Functioning, Disability and Health; D008297:Male; D008875:Middle Aged; D009468:Neuromuscular Diseases / Q000534:rehabilitation*; D000071066:Patient Reported Outcome Measures; D010817:Physician-Patient Relations; D036301:Qualitative Research; D011788:Quality of Life; D012121:Respiration, Artificial; D011795:Surveys and Questionnaires; D014910:Wheelchairs
keywords: Focus group; neuromuscular disease; patient-reported outcome; qualitative study; quality of life