title: Financial cost of amyotrophic lateral sclerosis: a case study.
abstract: There are only a few recently published reports of the cost of amyotrophic lateral sclerosis (ALS) care in the United States. Our objectives were to: 1) report annual and disease-duration costs; 2) provide costs related to specific care and services; 3) present costs by payor; and 4) identify strategies and resources that can be offered to patients to assist with the financial burden of ALS. Over a 10-year period (2001-2010), all expenses related to the cost of care for an individual patient were collected concurrently and then analyzed in 2012. Results showed that total disease-duration costs were $1,433,992 (85% paid by insurance, 9% paid by family, 6% paid by charities). The highest costs were for in-home caregivers ($669,150), ventilation ($212,430) and hospital care ($114,558). In conclusion, this case study illustrates costs of care for ALS as a burden for patients that may impact treatment decisions. Charity organizations and insurance case-managers provide services to patients that can help reduce this burden. Costs for specific services as well as resources identified by this study offer physicians and other healthcare providers data-based cost of care information and strategies to share with their patients.
authors.affiliation: The ALS Association, Alabama Chapter.
authors.forename: M
authors.initials: M
authors.lastname: Obermann
authors.forename: M
authors.initials: M
authors.lastname: Lyon
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000191:economics* / Q000628:therapy; D017281:Cost of Illness; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D012189:Retrospective Studies; D055815:Young Adult
keywords: Amyotrophic lateral sclerosis; home care; patient care costs