Understanding the burden on ALS patients and their caregivers

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study focuses on evaluating the psychological burden experienced by patients with amyotrophic lateral sclerosis (ALS) and their caregivers. It aims to assess the patients' feelings of being a burden and the associated psychological distress, including suicidal ideation. The study involves psychological assessments conducted on patients who have undergone multidisciplinary evaluations at a specialized ALS center in Marseille, along with their primary family caregivers. By centering the research on the patient's perspective, the study seeks to provide insights into the emotional challenges faced by both patients and caregivers.

Why it matters

Who can join: the full rules

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

Where it's running

• Service Maladies neuromusculaires et SLA
  Marseille, France Recruiting

Study contacts

• Principal investigator: Annie Verschueren — Ap-Hm
• Study coordinator: Annie Verschueren
• Email: annie.verschueren@ap-hm.fr
• Phone: 0491386578

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.