Quality of Life Evaluation With the SRI Questionnaire of ALS Patient With Non-invasive Ventilation — Quality EvALS  

Amyotrophic Lateral Sclerosis Clinical Trial

Official title: Quality of Life Evaluation With the SRI Questionnaire of ALS Patient With Non-invasive Ventilation

Status Recruiting

Clinical Trial 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

Clinical Trial 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 ;

Related Conditions & MeSH terms

• Amyotrophic Lateral Sclerosis
• Motor Neuron Disease
• Sclerosis

• NCT number: NCT05498883
• Study type: Interventional
• Source: Assistance Publique - Hôpitaux de Paris
• Contact: Capucine Pr MORELOT PANZINI, MD PhD
• Phone: +33 1 42 16 77 71
• Email: capucine.morelot@aphp.fr
• Status: Recruiting
• Phase: N/A
• Start date: September 13, 2022
• Completion date: September 13, 2024