Anticipated Patient and Caregiver Burden (FARP)
Amyotrophic Lateral Sclerosis
About this trial
This is an interventional supportive care trial for Amyotrophic Lateral Sclerosis focused on measuring amyotrophic lateral sclerosis, caregiver, burden, depression
Eligibility Criteria
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
Sites / Locations
- Service Maladies neuromusculaires et SLARecruiting
Arms of the Study
Arm 1
Experimental
Psychological assessments