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Anticipated Patient and Caregiver Burden — FARP  

Amyotrophic Lateral Sclerosis Clinical Trial

Official title:
Anticipated Patient and Caregiver Burden: Impact in People With Amyotrophic Lateral Sclerosis

Clinical Trial Summary

Amyotrophic lateral sclerosis (ALS) is a degenerative neurological disease that causes progressive motor disability and is life threatening within a few years. The severity of the disease, the progressive loss of autonomy that leads to dependence on family and caregivers, and the lack of effective treatment sometimes leads patients to a loss of hope and to dark thoughts. The prevalence of suicidal ideation is high, with more than one third of people with ALS experiencing it. The psychological suffering of patients is often associated with that of their caregivers. The evaluation of the patients' feeling of being a burden has rarely been addressed in previous studies in ALS on the notion of burden. In this work, the investigators wish to evaluate the patient's ideas of death by also taking into account the caregiver's burden and the patient's feeling of being a burden. They wish to better understand this difficult experience by refocusing the study on the patient himself, which has rarely been addressed in studies on ALS and the notion of burden. By working on the caregiver's burden, both from the caregiver's point of view and as perceived by the patient, the investigators hope to find avenues of intervention and define actions that could help patients and their families and improve the quality of life of the patient-caregiver couple.

Clinical Trial Description

n/a

Study Design

Related Conditions & MeSH terms

Clinical Trial Details
NCT number NCT05632757
Study type Interventional
Source Assistance Publique Hopitaux De Marseille
Contact Annie Verschueren
Phone 0491386578
Email annie.verschueren@ap-hm.fr
Status Recruiting
Phase N/A
Start date June 22, 2023
Completion date June 22, 2025
View Details
See also
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