Article

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. METHODS: 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). RESULTS: 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. CONCLUSION: 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.

Langue : ANGLAIS