ArticleBrain sciences2021
Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers' Lives.
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 28 papers, 3 of them syntheses 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
28 citing papers in PubMed, 3 syntheses or guidelines pooled it, 60 citations in OpenAlex.
- Health-related quality of life of informal carers in ALS: a systematic review of person reported outcome measures.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Pooled it
- Biomarkers of therapeutic efficacy in adolescents and adults with 5q spinal muscular atrophy: a systematic review.Acta neurologica Belgica · 2023Pooled it
- Caregiver Burden of Spinal Muscular Atrophy: A Systematic Review.PharmacoEconomics · 2023Pooled it
- Moral distress in healthcare professionals working with motor neuron disease.Palliative & supportive care · 2026Article
- Associations influencing quality of life in caregivers of patients with amyotrophic lateral sclerosis: a stress-process model approach.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Between guidelines and reality: expert neurologists' perspectives on structural resources for ALS care in Germany.Neurological research and practice · 2026Article
- Urinary incontinence and its impact on caregiver burden in the oldest-old: a cross-sectional study.BMC nursing · 2026Article
- Detection of inflammation and glial cell-related biomarkers in adults with spinal muscular atrophy receiving nusinersen therapy.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2025Article
- 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
- Living with Dysphagia and Dysarthria: A Qualitative Exploration of the Perspectives of People with Motor Neuron Disease and Their Caregivers.Healthcare (Basel, Switzerland) · 2025Article
- Caregiving burden among caregivers of people with myasthenia gravis.Orphanet journal of rare diseases · 2025Article
- Providing life-sustaining treatments at home for those with Motor Neurone Disease: A qualitative study of bereaved family members' experiences of responsibility.Palliative medicine · 2025Article
- Working with people living with motor neurone disease and the impact on professionals' emotional and psychological well-being: A scoping review.Palliative medicine · 2025Article
- Impact of sleep quality on disease progression in early-stage amyotrophic lateral sclerosis.Frontiers in neurology · 2025Article
- Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.Neurological research and practice · 2024Article
- Amyotrophic Lateral Sclerosis and Its Management during the COVID-19 Pandemic: A Qualitative Study with Thematic Analysis of Patients and Caregivers Who Participated in Self-Help Groups.Behavioral sciences (Basel, Switzerland) · 2023Article
- Economic evaluation of Motor Neuron Diseases: a nationwide cross-sectional analysis in Germany.Journal of neurology · 2023Article
- Analysis of Caregiver Burden Expressed in Social Media Discussions.International journal of environmental research and public health · 2023Article
- Health-Related Quality of Life in Spinal Muscular Atrophy Patients and Their Caregivers-A Prospective, Cross-Sectional, Multi-Center Analysis.Brain sciences · 2023Article
- Effects of a self-care educational program via telerehabilitation on quality of life and caregiver burden in amyotrophic lateral sclerosis: a single-blinded randomized clinical trial protocol.Frontiers in psychology · 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
28 authors at 14 institutions in 1 country.
Funding
Abstract
Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disease that causes progressive autonomy loss and need for care. This does not only affect patients themselves, but also the patients' informal caregivers (CGs) in their health, personal and professional lives. The big efforts of this multi-center study were not only to evaluate the caregivers' burden and to identify its predictors, but it also should provide a specific understanding of the needs of ALS patients' CGs and fill the gap of knowledge on their personal and work lives. Using standardized questionnaires, primary data from patients and their main informal CGs (
Indexed as
Identifiers
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.