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

Study Purpose:

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.

Study Status:



Amyotrophic Lateral Sclerosis

Study Type:


Type of Intervention:


Intervention Name:

Psychological assessments




Study Chair(s)/Principal Investigator(s):

Annie Verschueren, AP-HM ID:


Neals Affiliated?


Coordinating Center Contact Information

Annie Verschueren / email hidden; JavaScript is required / 0491386578

Study Sponsor:

Assistance Publique Hopitaux De Marseille

Estimated Enrollment:


Estimated Study Start Date:

06 / 15 / 2023

Estimated Study Completion Date:

06 / 15 / 2025

Posting Last Modified Date:

04 / 25 / 2023

Date Study Added to

12 / 01 / 2022

Minimum Age:

18 Years

Maximum Age:


Inclusion Criteria (patient) :

- Patient is at least 18 years of age.

- Patient having given informed consent

- Patient with ALS who has already had at least two multidisciplinary assessments in the ALS center in Marseille with an evaluation by the clinical psychologist.

- Patient with a motor handicap of grade 3 to 5 on the Rankin score

- Patient with a primary family caregiver at home (spouse, child) willing to participate in the study

- Patient who is a beneficiary of or affiliated with a social security plan

Inclusion Criteria (caregiver) :

- Adult subject at least 18 years of age.

- Subject who has given informed consent.

- Primary family caregiver of a patient with ALS who agrees to participate in the study

- Caregiver present during hospital visits.

Exclusion Criteria (patient):

- Patients with a serious and unstable associated disease, cardiac, oncological, hepatic or renal, psychiatric (schizophrenia, bipolar)

- Autonomous patient, who does not need the help of a third party for the basic gestures of daily life (Rankin 0 to 2)

- Patient living in an institution or alone at home

- Patient with cognitive impairment that interferes with activities of daily living

- Patients with marked emotional lability (spasmodic crying) due to ALS

- Patients who have had a recent diagnosis of their disease (less than 6 months)

- Patients who are unaware of the severity of their condition

- Any condition that in the opinion of the investigator or psychologist would not be compatible with the study.

Exclusion Criteria (caregiver):

- Subjects with severe and unstable cardiac, oncological, hepatic, renal or other illnesses.

- Subject with a history of psychiatric illness

Service Maladies neuromusculaires et SLA | Recruiting

Annie Verschueren / email hidden; JavaScript is required

Marseille 13005