Costs of illness in amyotrophic lateral sclerosis (ALS): a cross-sectional survey in Germany.

Orphanet Journal of Rare Diseases
Erik SchönfelderOlivia Schreiber-Katz

Abstract

Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder. Consequently, patients undergo a multidisciplinary treatment that often requires intensive use of medical resources. This study provides an estimate on the cost of illness depending on the clinical severity while also analysing the patients' health-related quality of life. Primary data from patients and caregivers was collected through a standardised questionnaire. Direct medical, direct non-medical and indirect costs were calculated using the latest German health economic guidelines. Patients were divided into five groups according to the King's staging system. Health-related quality of life was assessed using EuroQoL Group EQ-5D-5L™ questionnaire. Influencing factors on both total cost and quality of life were examined. The mean annual total cost of illness was 78,256€ per patient while the lifetime cost per patient was estimated at 246,184€. The prevalence based total burden yearly therefore was 519,776,352€ in Germany. Nearly half of the costs were attributable to informal care. With increase of the clinical severity stage, costs rose and quality of life decreased. The score of the revised Amyotrophic Laterals Sclerosis Functional Rating Scale was id...Continue Reading

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Citations

Apr 4, 2021·Brain Sciences·Tara PeseschkianOlivia Schreiber-Katz
Apr 7, 2021·Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration·Ahmad Al KhleifatAmmar Al-Chalabi
May 28, 2021·Journal of Neurology·Anna M BlokhuisJan T Groothuis
Jun 19, 2021·The European Journal of Health Economics : HEPAC : Health Economics in Prevention and Care·K Achtert, L Kerkemeyer

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