Journal Article

DZNE-2023-00952

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Economic evaluation of Motor Neuron Diseases: a nationwide cross-sectional analysis in Germany.

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

2023
Springer Heidelberg

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Please use a persistent id in citations: doi:10.1007/s00415-023-11811-1

Abstract: 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.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.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.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.

Keyword(s): Humans (MeSH) ; Quality of Life (MeSH) ; Cost of Illness (MeSH) ; Cross-Sectional Studies (MeSH) ; Amyotrophic Lateral Sclerosis (MeSH) ; Cost-Benefit Analysis (MeSH) ; Surveys and Questionnaires (MeSH) ; Health Care Costs (MeSH) ; Germany: epidemiology (MeSH) ; Muscular Atrophy, Spinal (MeSH) ; Quality-adjusted life years (QALYs) ; Quality-adjusted life years (QALYs) ; Cost of illness (COI) ; Cost-utilities ; Health-related Quality of Life (HRQoL) ; Motor Neuron Disease (MND) ; Quality-adjusted life years (QALYs) ; Socio-economic burden

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Contributing Institute(s):

1. Translational Parkinson Research (AG Falkenburger)
2. Translational Neurodegeneration (AG Hermann)
3. Clinical Research (Munich) (Clinical Research (Munich))
4. Clinical Study Center Ulm (Clinical Study Center Ulm)

Research Program(s):

1. 353 - Clinical and Health Care Research (POF4-353) (POF4-353)

Appears in the scientific report 2023

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Database coverage:
; ; ; BIOSIS Previews ; Clarivate Analytics Master Journal List ; Current Contents - Life Sciences ; Ebsco Academic Search ; IF >= 5 ; JCR ; Nationallizenz ; SCOPUS ; Web of Science Core Collection

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