Quality of Life in Ventilator-dependant Neuromuscular Patients

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

119 participants

Study Classification

OBSERVATIONAL

Study Start Date

2020-12-02

Study Completion Date

2021-12-07

Brief Summary

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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).

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Detailed Description

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Conditions

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Neuromuscular Diseases Respiration, Artificial Tracheostomy Noninvasive Ventilation Quality of Life

Study Design

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Observational Model Type

COHORT

Study Time Perspective

CROSS_SECTIONAL

Eligibility Criteria

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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

Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No