The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France

Most published economic studies about the burden of amyotrophic lateral sclerosis (ALS) have measured direct and indirect costs but did not consider the perspective of patients and families. The French ALS patient association, ARSLA, contacted 15 ALS reference centers to recruit a random sample of ALS patients stratified by age and severity accepting to participate in a structured interview survey. The objective was to document the out-of-pocket (OOP) expenses associated with ALS for patients and families in 2024. Fifty patients with a mean age 61.5 years (SD 12) participated in the survey. The average time since diagnosis was 28.9 months (SD 26.8). Most patients had disabling motor impairment, half of them (n = 26, 52%) affected 4 limbs, 27 (54%) required noninvasive respiratory support and 11 (22%) nutritional support. A proportion of 48% of patients or caregivers reported Out-of-Pocket (OOP) expenses for mobility equipment, 50% for home modifications, 40% for vehicle adaptations, and 54% for paying for paid caregivers. The mean annual OOP expenses was €7,764 (SD 9,776) in total of which home adaptations averaged €3,074 (SD 6,583), personal vehicle adaptation €2,774 (SD 5,239) and paid caregivers €1,279 (SD 3,351). The factors statistically significant for higher overall OOP expenses were the duration of ALS since diagnostic (p = 0.026) and use of paid caregivers (p = 0.005). The support of family caregivers was almost systematic (88%), involving spouses (95.5%), children (22.7%) and relatives (13.6%). The mean annual loss of family income associated with professional change of patients and family caregivers was €7,633. When added to the OOP, the mean total annual economic burden was €15,397. Despite the full coverage of all ALS-related health expenditures within the French healthcare system and additional associated financial support, it remains a substantial economic burden for patients and families to manage this condition. Not applicable.