Current status and direct medical cost of amyotrophic lateral sclerosis in the region of Catalonia: A population-based analysis

INTRODUCTION: Amyotrophic lateral sclerosis is a neurodegenerative disease that leads to motor weakness. There is no cure, and treatment focuses on slowing down progression, which is achieved by a multidisciplinary approach. Hence, it is vital to understand the population needs for an optimal management of the disease. OBJECTIVES: To evaluate the current status of amyotrophic lateral sclerosis in the region of Catalonia, how the disease is managed and its direct medical costs. METHODS: Records corresponding to 841 patients diagnosed between the year 2007 and 2017 were analysed in a retrospective population-based study, including data from primary care centres, hospitals (inpatient and outpatient care), extended care facilities and mental health centres. RESULTS: Mean diagnosis age was 66.11 years (SD = 12.61) and 52.79% of admitted patients were males. On average, 14.91 months elapsed between diagnosis and death, and the mean age of death was 72.64 years (SD = 12.00). Patients were admitted 10.70 times per year, mostly into primary care (86.50%), although most expenses were concentrated in hospital inpatient care. The mean cost per patient per year was €1,168. The 83.24% of patients had more than 4 systems affected by chronic conditions. CONCLUSIONS: Primary care is of utmost importance in ALS attention in Catalonia, which may have a direct impact in reducing hospitalisation costs. Nonetheless, the expenses linked to inpatient care represent the biggest portion of total costs. Patients’ healthcare usage patterns and the high proportion of patients with multiple chronic conditions should be taken into account in order to adapt and improve guidelines and healthcare systems.