ArticleOrphanet journal of rare diseases2020
Costs of illness in amyotrophic lateral sclerosis (ALS): a cross-sectional survey in Germany.
Article in Orphanet journal of rare diseases, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
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Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The economic burden of amyotrophic lateral sclerosis: a systematic review.The European journal of health economics : HEPAC : health economics in prevention and care · 2021Pooled it
- [Motor neuron diseases from a radiological perspective : Focus on amyotrophic lateral sclerosis].Radiologie (Heidelberg, Germany) · 2026Review
- The economic burden of amyotrophic lateral sclerosis for patients and families: a survey on out-of-pocket expenses and income loss in France.Orphanet journal of rare diseases · 2026Article
- The burden of care: Health and wellbeing of informal caregivers of people with amyotrophic lateral sclerosis.Palliative & supportive care · 2026Article
- Cost-utility analysis of Edaravone compared to Riluzole in patients with amyotrophic lateral sclerosis (ALS) in Iran.Cost effectiveness and resource allocation : C/E · 2026Article
- Palliative care pathways in Amyotrophic Lateral Sclerosis (ALS): a sequence analysis of health claims data.BMC palliative care · 2025Article
- Epidemiology, disease evolution and economic burden of amyotrophic lateral sclerosis in France using the French national health data system.Brain communications · 2025Article
- Health care resource utilization and costs across stages of amyotrophic lateral sclerosis in the United States.Journal of managed care & specialty pharmacy · 2024Article
- In vivo diagnosis of TDP-43 proteinopathies: in search of biomarkers of clinical use.Translational neurodegeneration · 2024Review
- Nonpharmacological intervention therapies for dementia: potential break-even intervention price and savings for selected risk factors in the European healthcare system.BMC public health · 2024Article
- Health-related quality of life across disease stages in patients with amyotrophic lateral sclerosis: results from a real-world survey.Journal of neurology · 2024Article
- The preferences of people with amyotrophic lateral sclerosis on riluzole treatment in Europe.Scientific reports · 2023Article
- People Diagnosed with Myasthenia Gravis have Lower health-related quality of life and Need More Medical and Caregiver Help in Comparison to the General Population: Analysis of Two Observational Studies.Advances in therapy · 2023Observational
- Economic evaluation of Motor Neuron Diseases: a nationwide cross-sectional analysis in Germany.Journal of neurology · 2023Article
- Biochemical parameters as a tool to assess the nutritional status of patients with amyotrophic lateral sclerosis.Frontiers in neurology · 2023Article
- The Role and Therapeutic Potential of the Integrated Stress Response in Amyotrophic Lateral Sclerosis.International journal of molecular sciences · 2022Review
- Formulation, Characterization, and Cytotoxicity Evaluation of Lactoferrin Functionalized Lipid Nanoparticles for Riluzole Delivery to the Brain.Pharmaceutics · 2022Article
- Caregivers' View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis-How Can We Improve Holistic Care in ALS?Journal of clinical medicine · 2022Article
- Drug costs in context: assessing drug costs in cost-of-illness analyses.Drugs in context · 2022Article
- The socioeconomic burden of facioscapulohumeral muscular dystrophy.Journal of neurology · 2021Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAmyotrophic 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.
methodsPrimary 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.
resultsThe 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 identified as one major influencing factor on total costs, while subjective impairment in daily activities and classification into a care level as opposed to having no care level influenced patients' quality of life.
conclusionIt is essential to understand the socioeconomic burden of a disease. These data can be used to improve patient care standards and quality of life while also serving as a basis for cost-benefit analyses during the approval process of new treatments.
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