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

Research output: Contribution to journalResearch articleContributedpeer-review


  • Felix Heinrich - , Hannover Medical School (MHH) (Author)
  • Isabell Cordts - , Klinikum Rechts der Isar (MRI TUM) (Author)
  • René Günther - , Department of Neurology, German Center for Neurodegenerative Diseases, Dresden site (Partner: DZNE of the Helmholtz Association) (Author)
  • Benjamin Stolte - , University Hospital Essen (Author)
  • Daniel Zeller - , University Hospital of Würzburg (Author)
  • Carsten Schröter - , Hoher Meißner Clinic (Author)
  • Ute Weyen - , BG University Hospital Bergmannsheil Bochum (Author)
  • Martin Regensburger - , Friedrich-Alexander University Erlangen-Nürnberg (Author)
  • Joachim Wolf - , Diakonissenkrankenhaus Mannheim (Author)
  • Ilka Schneider - , Martin Luther University Halle-Wittenberg (Author)
  • Andreas Hermann - , University of Rostock (Author)
  • Moritz Metelmann - , University Hospital Leipzig (Author)
  • Zacharias Kohl - , University Hospital Regensburg (Author)
  • Ralf A Linker - , University Hospital Regensburg (Author)
  • Jan Christoph Koch - , University Medical Center Göttingen (Author)
  • Florentine Radelfahr - , Hospital of the Ludwig-Maximilians-University (LMU) Munich (Author)
  • Erik Schönfelder - , Hannover Medical School (MHH) (Author)
  • Pavel Gardt - , Hannover Medical School (MHH) (Author)
  • Tara Mohajer-Peseschkian - , Hannover Medical School (MHH) (Author)
  • Alma Osmanovic - , Hannover Medical School (MHH) (Author)
  • Thomas Klopstock - , Hospital of the Ludwig-Maximilians-University (LMU) Munich (Author)
  • Johannes Dorst - , Ulm University Medical Center (Author)
  • Albert C Ludolph - , Ulm University Medical Center (Author)
  • Oliver Schöffski - , Friedrich-Alexander University Erlangen-Nürnberg (Author)
  • Matthias Boentert - , University Hospital Münster (Author)
  • Tim Hagenacker - , University Hospital Essen (Author)
  • Marcus Deschauer - , Klinikum Rechts der Isar (MRI TUM) (Author)
  • Paul Lingor - , Klinikum Rechts der Isar (MRI TUM) (Author)
  • Susanne Petri - , Hannover Medical School (MHH) (Author)
  • Olivia Schreiber-Katz - , Hannover Medical School (MHH) (Author)


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.


Original languageEnglish
Pages (from-to)4922-4938
Number of pages17
JournalJournal of neurology
Issue number10
Publication statusPublished - Oct 2023

External IDs

PubMedCentral PMC10511618
Scopus 85162926856



  • Humans, Quality of Life, Cost of Illness, Cross-Sectional Studies, Amyotrophic Lateral Sclerosis, Cost-Benefit Analysis, Surveys and Questionnaires, Health Care Costs, Germany/epidemiology, Muscular Atrophy, Spinal