ArticleNeurological research and practice2024
Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.
Article in Neurological research and practice, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06418646 (Patients' and Caregivers' Views of Multidimensional Care in Amyotropic Lateral Sclerosis in Germany), which is not on this map. Cited by 4 papers.
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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.
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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.
Patients' and Caregivers' Views of Multidimensional Care in Amyotropic Lateral Sclerosis in Germany
Who cites it
4 citing papers in PubMed.
- Implementation of specialised care improves survival in patients with amyotrophic lateral sclerosis.Neurological research and practice · 2026Article
- Ethical challenges in treatment-goal transitions in invasively ventilated ALS: a case-based topical review.Neurological research and practice · 2026Review
- Between guidelines and reality: expert neurologists' perspectives on structural resources for ALS care in Germany.Neurological research and practice · 2026Article
- The evolution of serious health-related suffering from 1990 to 2021: an update to The Lancet Commission on global access to palliative care and pain relief.The Lancet. Global health · 2025Article
Corrections and comments
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Authors and funding
44 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionAmyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them.
methodsThis project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment. PERSPECTIVE: It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed.
trial registrationThe study is registered at ClinicalTrails.gov; NCT06418646.
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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.