title: Economic burden of amyotrophic lateral sclerosis: a Canadian study of out-of-pocket expenses.
abstract: This study quantifies the 'out-of-pocket' expenses incurred by individuals with amyotrophic lateral sclerosis (ALS) and their families, explores cost-driving factors and describes the current state of financial support in a Canadian cohort. We performed structured cost-of-illness interviews with 50 consecutive ALS patients and family members detailing disease-specific factors, direct and indirect costs. Direct costs were divided into 'out-of-pocket' and 'government/non-profit organization (NPO) supported'. Results showed that the average annual direct cost per patient was $32,337, of which $19,574 (61%) was paid for out-of-pocket. The most significant direct cost was disease-related home renovations, which garnered minimal government or NPO support. The costs of mobility aids, medical expenses, and private personal support workers were also substantial. Higher out-of-pocket costs were associated with an ALS Functional Rating Scale gross motor subscore of ≤ 6 (p = 0.03), limb-predominant symptoms (p = 0.04) and > 4 h/week of personal support care (p = 0.005). Annual indirect costs (lost wages) for patients with ALS and family members providing care were $56,821. In conclusion, this study quantified the substantial personal economic impact of ALS as measured by non-reimbursed, out-of-pocket expenses. Mobilization of additional resources for ALS patients and families is required to soften the economic burden of this disabling disease.
authors.affiliation: Department of Medicine, Sunnybrook Health Sciences Centre, University of Toronto , Ontario , Canada.
authors.forename: Matthew
authors.initials: M
authors.lastname: Gladman
authors.forename: Celina
authors.initials: C
authors.lastname: Dharamshi
authors.forename: Lorne
authors.initials: L
authors.lastname: Zinman
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000191:economics* / Q000453:epidemiology; D002170:Canada; D015331:Cohort Studies; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D004651:Employment; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged
keywords: Amyotrophic lateral sclerosis; direct costs; economics; indirect costs; out-of-pocket costs