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

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

Inclusion criteria

Patients :

• 18 years or more
• Patient followed for ALS probable or certain with Awaji criteria
• group 1 : severe chronic respiratory failure, with a decision by the attending physician to start NIV
• group 2 : complete dependence on NIV

Caregivers :

• 18 years or more
• Informed and does not object to the study
• Primary caregiver for more than 3 months of an ALS patient on NIV (either at initiation or with 24 hours NIV dependence)
• More than 30 hours spent at home per week
• Met the inclusion criteria for group 1 (NIV initiation) or group 2 (24 hours NIV dependence)

Exclusion criteria

Patients :

• Patient under legal protection/ guardianship
• insufficient command of French
• Severe cognitive impairment, particularly in relation to frontotemporal degeneration
• No indication criteria for NIV.

Caregivers :

• insufficient command of French
• Caregiver of a patient with another chronic pathology