ArticleBrain sciences2021
A Nation-Wide, Multi-Center Study on the Quality of Life of ALS Patients in Germany.
Article in Brain sciences, 2021. 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.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 30 citations in OpenAlex.
- Assessing the psychometric properties of quality of life measures in individuals with amyotrophic lateral sclerosis: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Pooled it
- Long-Term Tofersen in SOD1 Amyotrophic Lateral Sclerosis.JAMA neurology · 2026Trial
- Nationwide Epidemiology of Motor Neuron Diseases in Latvia (2020-2024): Incidence, Prevalence, and Clinical Characteristics.European journal of neurology · 2026Article
- Between guidelines and reality: expert neurologists' perspectives on structural resources for ALS care in Germany.Neurological research and practice · 2026Article
- Gold coast criteria but not neurofilaments improve diagnostic sensitivity in a specialized ALS university center.Clinical neurophysiology practice · 2026Article
- How can we reduce psychological burden for patients of amyotrophic lateral sclerosis and their family caregivers? - Insights from the participatory multi-method study "potentiALS".BMC neurology · 2025Observational
- Health-Related Quality of Life, Psychological Health, and Patient-Reported Outcomes of Amyotrophic Lateral Sclerosis Patients in China.Brain sciences · 2025Article
- Illness acceptance and quality of life in amyotrophic lateral sclerosis: the role of health and environmental factors.Frontiers in neurology · 2025Article
- An eight-year follow-up study of Home Invasive Mechanical Ventilation in Finland.BMC pulmonary medicine · 2024Article
- Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review.Brain sciences · 2024Article
- Preservation of Vocal Function in Amyotrophic Lateral Sclerosis (ALS) Patients Following Percutaneous Dilatational Tracheostomy (PDT) and Adjuvant Therapies.Biomedicines · 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
- Effects of tofersen treatment in patients withEClinicalMedicine · 2024Article
- Update in Noninvasive Home Mechanical Ventilation: A Narrative Review of Indications, Outcomes, and Monitoring.Canadian respiratory journal · 2024Review
- The ethical significance of user-control in AI-driven speech-BCIs: a narrative review.Frontiers in human neuroscience · 2024Review
- Economic evaluation of Motor Neuron Diseases: a nationwide cross-sectional analysis in Germany.Journal of neurology · 2023Article
- Conceptual design of a biped-wheeled wearable machine for ALS patients.Journal of neurology · 2023Article
- Quality of life in patients with chronic respiratory failure on home mechanical ventilation.European respiratory review : an official journal of the European Respiratory Society · 2023Review
- Quality of life and depression in patients with amyotrophic lateral sclerosis - does the country of origin matter?BMC palliative care · 2023Article
- Quality of Life in Amyotrophic Lateral Sclerosis Patients and Care Burden of Caregivers in Sardinia during COVID-19 Pandemic.Healthcare (Basel, Switzerland) · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
29 authors at 15 institutions in 1 country.
Funding
Abstract
Improving quality of life (QoL) is central to amyotrophic lateral sclerosis (ALS) treatment. This Germany-wide, multicenter cross-sectional study analyses the impact of different symptom-specific treatments and ALS variants on QoL. Health-related QoL (HRQoL) in 325 ALS patients was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSAQ-5) and EuroQol Five Dimension Five Level Scale (EQ-5D-5L), together with disease severity (captured by the revised ALS Functional Rating Scale (ALSFRS-R)) and the current care and therapies used by our cohort. At inclusion, the mean ALSAQ-5 total score was 56.93 (max. 100, best = 0) with a better QoL associated with a less severe disease status (β = -1.96 per increase of one point in the ALSFRS-R score,
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.