NCT05498883

Quality of Life Evaluation with the SRI Questionnaire of ALS Patient with Non-invasive Ventilation

• Status: Completed
• Phase: N/A
• Study type: Interventional
• Enrollment: 93 (actual)
• Sponsor: Assistance Publique - Hôpitaux de Paris · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Not accepted

Summary

This study aims to measure the quality of life of ALS patients by the SRI questionnaire, in two distinct patient groups : Patient requiring initiation of NIV, and patients 24 hours dependent on NIV This study also seeks to assess the quality of life of the caregivers with the Zarit Burden interview in those two populations

Detailed description

The course of the study is as follows: Patient newly ventilated with NIV : inclusion is done on the day of starting NIV. On the day of inclusion: Clinical examination, completion of the ALS-FRS score, completion of the SRI score. For the caregiver: Completion of the Zarit Burden Inerview Reassessment of scores (SRI, Zarit-burden, ALS-FRS), at three-month and six-month follow-up Patient dependent of NIV : On the day of inclusion: Clinical examination, completion of the ALS-FRS score, completion of the SRI score. For the caregiver: Completion of the Zarit Burden Inerview Reassessment of scores (SRI, Zarit-burden, ALS-FRS), at three-month follow-up

Conditions

• Amyotrophic Lateral Sclerosis

Interventions

Type	Name	Description
OTHER	Score completion	completion of the SRI score

Timeline

• Start date: 2022-09-13
• Primary completion: 2024-07-03
• Completion: 2024-07-03
• First posted: 2022-08-12
• Last updated: 2024-09-19

Locations

1 site across 1 country: France