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Health and social care costs of managing amyotrophic lateral sclerosis (ALS): An Irish perspective

Abstract The aim of this study was to quantify the health and social care costs associated with managing amyotrophic lateral sclerosis (ALS) in Ireland. Resource use of a representative group of deceased ALS patients attending a multidisciplinary ALS clinic was identified from a retrospective chart review and telephone interview with the main caregiver. Unit cost estimates were applied to each resource to identify the cost per patient. Cost drivers were identified using multivariate linear regression. Results showed that from time of diagnosis to death, the cost per month was €1795, 21% of which was attributable to costs associated with the multidisciplinary clinic, 72% to community based care and 7% to aids and appliances. Higher monthly cost was associated with shorter survival and use of gastrostomy and non-invasive ventilation. In conclusion, ALS imposes a significant cost burden on the health services. More work is required to quantify the costs in other sectors, including informal care and productivity losses.