Quality of Life in Ventilator-dependant Neuromuscular Patients (EqualVENT)

Centre d'Investigation Clinique et Technologique 805

Status: Completed

Conditions: Quality of Life; Noninvasive Ventilation; Neuromuscular Diseases; Respiration, Artificial; Tracheostomy

Study type: Observational

Funder types: Other

Identifiers

NCT04652401

2020-A00997-32

Details and patient eligibility

About

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).

Enrollment: 119 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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