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

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT04652401

Acronym

EqualVENT

Enrollment

119

Registered

2020-12-03

Start date

2020-12-02

Completion date

2021-12-07

Last updated

2022-02-09

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Neuromuscular Diseases, Noninvasive Ventilation, Quality of Life, Respiration, Artificial, Tracheostomy

Brief summary

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).

Interventions

None listed

Study design

Observational model

COHORT

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

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

Design outcomes

Primary

Measure	Time frame	Description
Score of the Severe Respiratory Insufficiency questionnaire (SRI)	1 Day	Higher score represents better quality of life
Score of the Quality of Life Measure for people with slowly progressive and genetic neuromuscular disease questionnaire (QoL-gNMD)	1 Day	Higher score represents better quality of life

Countries

France

Outcome results