Quality of Life in Ventilator-dependant Neuromuscular Patients

Assessment of Quality of Life and Its Determinants in Ventilator-dependent Patients With Slowly Progressive Neuromuscular Disease

This study aims at evaluating the quality of life of patients with slowly progressive neuromuscular disorders who are dependant on mechanical ventilation (daily usage ≥ 16h).

Inclusion Criteria:

• Patients with slowly progressive neuromuscular disorder (NMD), non walking
• Patients dependant on mechanical ventilation (daily usage ≥ 16h) for at least 1 year before inclusion
• Aged ≥ 18 yo
• Consent for participation
• Affiliated to a social security regime

Exclusion Criteria:

• Patients with medically non-stable NMD: fever, acute respiratory infection, organ decompensation
• Patients with significant cognitive impairment (inability to read and/or incomprehension of questions)
• Patients with fast-evolving neuromuscular disease
• Patients declining to participate in the study
• Patients under guardianship and/or trusteeship
• Pregnant women