NCT04652401已完成不适用
Assessment of Quality of Life and Its Determinants in Ventilator-dependent Patients With Slowly Progressive Neuromuscular Disease
Centre d'Investigation Clinique et Technologique 8051 个研究点 分布在 1 个国家目标入组 119 人开始时间: 2020年12月2日最近更新:
适应症
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 发起方
- 入组人数
- 119
- 试验地点
- 1
- 主要终点
- Score of the Quality of Life Measure for people with slowly progressive and genetic neuromuscular disease questionnaire (QoL-gNMD)
研究概览
简要总结
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).
研究设计
- 研究类型
- Observational
- 观察模型
- Cohort
- 时间视角
- Cross Sectional
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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
排除标准
- •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
结局指标
主要结局
Score of the Quality of Life Measure for people with slowly progressive and genetic neuromuscular disease questionnaire (QoL-gNMD)
时间窗: 1 Day
Higher score represents better quality of life
Score of the Severe Respiratory Insufficiency questionnaire (SRI)
时间窗: 1 Day
Higher score represents better quality of life
次要结局
未报告次要终点
研究者
研究点 (1)
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