ArticleJournal of neurology2017
Experience matters: neurologists' perspectives on ALS patients' well-being.
Article in Journal of neurology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
What it found
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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
13 citing papers in PubMed, 23 citations in OpenAlex.
- Alterations of Fat and Ketone Body Metabolism in ALS and SMA-A Prospective Observational Study.European journal of neurology · 2025Observational
- Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review.Brain sciences · 2024Article
- One third of physicians discuss exit strategies with patients with amyotrophic lateral sclerosis: Results from nationwide surveys among German and Polish neurologists.Brain and behavior · 2024Article
- Towards clinical application of implantable brain-computer interfaces for people with late-stage ALS: medical and ethical considerations.Journal of neurology · 2023Review
- Well-being on supportive techniques in amyotrophic lateral sclerosis: from neurologists' perspective.Annals of clinical and translational neurology · 2022Article
- Quality of life and mental health in the locked-in-state-differences between patients with amyotrophic lateral sclerosis and their next of kin.Journal of neurology · 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
- Disease progression but not physical state per se determines mental wellbeing in ALS.Journal of neurology · 2020Article
- An observational study on quality of life and preferences to sustain life in locked-in state.Neurology · 2019Observational
- Interprofessional Care for Neuromuscular Disease.Current treatment options in neurology · 2019Review
- Non-invasive ventilation in amyotrophic lateral sclerosis.Therapeutic advances in neurological disorders · 2019Review
- Ethical Principles in Patient-Centered Medical Care to Support Quality of Life in Amyotrophic Lateral Sclerosis.Frontiers in neurology · 2019Review
- Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach.Journal of multidisciplinary healthcare · 2017Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Despite the fatal outcome and progressive loss of physical functioning in amyotrophic lateral sclerosis (ALS), many patients maintain contentment in life. It has been shown that non-professionals tend to underestimate the well-being of patients with ALS, but professionals' perspective is yet to be studied. In total, 105 neurologists with varying degrees of experience with ALS were included in an anonymous survey. They were asked to estimate the quality of life and depressiveness of ALS patients with artificial ventilation and nutrition. Physicians' estimations were compared with previously reported subjective ratings of ALS patients with life-prolonging measures. Neurologists with significant experience on ALS and palliative care were able to accurately estimate depressiveness and quality of life of ALS patients with life-prolonging measures. Less experienced neurologists' estimation differed more from patients' reports. Of all life-prolonging measures neurologists regarded invasive ventilation as the measure associated with lowest quality of life and highest depressiveness of the patients. Experienced neurologists as well as neurologists with experience in palliative care are able to better empathize with patients with a fatal illness such as ALS and support important decision processes.
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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.