Economic evaluation of Motor Neuron Diseases: a nationwide cross-sectional analysis in Germany

Heinrich F, Cordts I, Günther R, Stolte B, Zeller D, Schröter C, Weyen U, Regensburger M, Wolf J, Schneider I, Hermann A, Metelmann M, Kohl Z, Linker RA, Koch JC, Radelfahr F, Schönfelder E, Gardt P, Mohajer-Peseschkian T, Osmanovic A, Klopstock T, Dorst J, Ludolph AC, Schöffski O, Boentert M, Hagenacker T, Deschauer M, Lingor P, Petri S, Schreiber-Katz O (2023)

Publication Type: Journal article

Publication year: 2023

Journal

DOI: 10.1007/s00415-023-11811-1

Abstract

Background and objectives: Motor Neuron Diseases (MND) are rare diseases but have a high impact on affected individuals and society. This study aims to perform an economic evaluation of MND in Germany. Methods: Primary patient-reported data were collected including individual impairment, the use of medical and non-medical resources, and self-rated Health-Related Quality of Life (HRQoL). Annual socio-economic costs per year as well as Quality-Adjusted Life Years (QALYs) were calculated. Results: 404 patients with a diagnosis of Amyotrophic Lateral Sclerosis (ALS), Spinal Muscular Atrophy (SMA) or Hereditary Spastic Paraplegia (HSP) were enrolled. Total annual costs per patient were estimated at 83,060€ in ALS, 206,856€ in SMA and 27,074€ in HSP. The main cost drivers were informal care (all MND) and disease-modifying treatments (SMA). Self-reported HRQoL was best in patients with HSP (mean EuroQoL Five Dimension Five Level (EQ-5D-5L) index value 0.67) and lowest in SMA patients (mean EQ-5D-5L index value 0.39). QALYs for patients with ALS were estimated to be 1.89 QALYs, 23.08 for patients with HSP and 14.97 for patients with SMA, respectively. Cost-utilities were estimated as follows: 138,960€/QALY for ALS, 525,033€/QALY for SMA, and 49,573€/QALY for HSP. The main predictors of the high cost of illness and low HRQoL were disease progression and loss of individual autonomy. Conclusion: As loss of individual autonomy was the main cost predictor, therapeutic and supportive measures to maintain this autonomy may contribute to reducing high personal burden and also long-term costs, e.g., care dependency and absenteeism from work.

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Additional Organisation(s)

Involved external institutions

Medizinische Hochschule Hannover (MHH) / Hannover Medical School Germany (DE) Klinikum rechts der Isar Germany (DE) Universitätsklinikum Essen Germany (DE) Julius-Maximilians-Universität Würzburg Germany (DE) Diakonissenkrankenhaus Mannheim GmbH Germany (DE) Martin-Luther-Universität Halle-Wittenberg (MLU) Germany (DE) Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil Germany (DE) Universität Regensburg Germany (DE) Klinikum der Universität München Germany (DE) Universität Ulm Germany (DE) Universitätsklinikum Münster Germany (DE) Universitätsklinikum Carl Gustav Carus Dresden Germany (DE) Klinik Hoher Meißner Germany (DE) Universitätsmedizin Rostock Germany (DE) Universitätsklinikum Leipzig Germany (DE) Universitätsklinikum Göttingen Germany (DE)

How to cite

APA:

Heinrich, F., Cordts, I., Günther, R., Stolte, B., Zeller, D., Schröter, C.,... Schreiber-Katz, O. (2023). Economic evaluation of Motor Neuron Diseases: a nationwide cross-sectional analysis in Germany. Journal of Neurology. https://doi.org/10.1007/s00415-023-11811-1

MLA:

Heinrich, Felix, et al. "Economic evaluation of Motor Neuron Diseases: a nationwide cross-sectional analysis in Germany." Journal of Neurology (2023).

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