Presentation (CTI)

OBJECTIVES: This study quantifies and qualifies the out-of-pocket expenses (OOP) of patients with amyotrophic lateral sclerosis (ALS), explores cost factors and assesses the impact on caregivers.
METHODS: A descriptive multicentre survey was conducted among ALS patients and/or their caregivers from 15 rare disease centres in France, in addition to a SNDS analysis. A questionnaire was developed in collaboration with the ARSLA association and the FilSLAN network.
RESULTS: Fifty patients (average age 61.5 years) responded to the survey between 2023 and 2024. The average time since diagnosis was 2 years and 5 months. The majority of patients had disabling motor impairment, half of which affected all four limbs, 50% required respiratory support and 22% required nutritional support. 50% of patients or their caregivers reported OOP expenses for mobility equipment, 40% for everyday equipment, 40% for vehicle adaptations, and 42% reported OOP expenses for their professional caregivers. The average annual OOP expenses was €1,900 for routine expenses related to the disease and €112 for consultations and hospitalisations not covered by insurance. The cost of technical aids and home adaptations averaged €16,000 since the onset of the disease. There was a tendency for overall OOP expenses to be higher and correlated with the severity and duration of ALS. The OOP expenses differential was greater for expenses related to technical aids and home and vehicle adaptations. However, patients with respiratory and/or nutritional support had lower OOP expenses than patients without support. Finally, the use of family caregivers was almost systematic, involving a change in the professional activity of the caregiver spouse in 64% of cases.
CONCLUSIONS: The mobilisation of additional resources for ALS patients and their families is necessary to reduce the economic burden of this disabling disease.