Actively Recruiting
Anticipated Patient and Caregiver Burden
Led by Assistance Publique Hopitaux De Marseille · Updated on 2024-11-25
126
Participants Needed
1
Research Sites
208 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Anticipated Patient and Caregiver Burden
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patient is at least 18 years of age
- Patient has given informed consent
- Patient with ALS who has had at least two multidisciplinary assessments in the ALS center in Marseille with evaluation by a clinical psychologist
- Patient has a motor handicap graded 3 to 5 on the Rankin score
- Patient has a primary family caregiver at home willing to participate
- Patient is affiliated with a social security plan
- Caregiver is at least 18 years old
- Caregiver has given informed consent
- Caregiver is the primary family caregiver of a patient with ALS and agrees to participate
- Caregiver is present during hospital visits
You will not qualify if you...
- Patient has a serious and unstable associated disease such as cardiac, oncological, hepatic, renal, or psychiatric illness (schizophrenia, bipolar)
- Patient is autonomous and does not need help with basic daily activities (Rankin 0 to 2)
- Patient lives in an institution or alone at home
- Patient has cognitive impairment interfering with daily activities
- Patient has marked emotional lability (spasmodic crying) due to ALS
- Patient has had a recent diagnosis (less than 6 months)
- Patient is unaware of the severity of their condition
- Any condition judged incompatible with the study by the investigator or psychologist
- Caregiver has severe and unstable cardiac, oncological, hepatic, renal, or other illnesses
- Caregiver has a history of psychiatric illness
AI-Screening
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Trial Site Locations
Total: 1 location
1
Service Maladies neuromusculaires et SLA
Marseille, France, 13005
Actively Recruiting
Research Team
A
Annie Verschueren
CONTACT
A
Annie Verschueren
CONTACT
How is the study designed?
Study Type
INTERVENTIONAL
Masking
NONE
Allocation
NA
Model
SINGLE_GROUP
Primary Purpose
SUPPORTIVE_CARE
Number of Arms
1
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