ArticleBMC neurology2012
Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: a comparative study.
Article in BMC neurology, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 45 papers, 1 of them a synthesis that pooled it.
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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.
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Who cites it
45 citing papers in PubMed, 1 synthesis or guideline pooled it, 156 citations in OpenAlex.
- Caregiver burden in amyotrophic lateral sclerosis: A systematic review.Palliative medicine · 2018Pooled it
- An online intervention for carers to manage behavioral symptoms in motor neuron disease (MiNDToolkit): a randomized parallel multi-center feasibility trial.Amyotrophic lateral sclerosis & frontotemporal degeneration · 2024Trial
- Living with Amyotrophic Lateral Sclerosis: Exploring what matters to patients and caregivers through their experiences.Palliative care and social practice · 2026Article
- Caregivers in amyotrophic lateral sclerosis (ALS): preliminary results between paid care and family care.Health psychology and behavioral medicine · 2026Article
- Understanding health-related quality of life of informal carers in amyotrophic lateral sclerosis: a scoping review and conceptual framework.Health and quality of life outcomes · 2025Article
- Advancing Future Amyotrophic Lateral Sclerosis Medicines by Incorporating The Patient Voice Into Patient-Centered Holistic Measurement Strategies for Clinical and Real-World Studies: Results from Targeted Literature Reviews.Neurology and therapy · 2025Article
- Identifying Mild Behavioral and Neurocognitive Impairment in Amyotrophic Lateral Sclerosis (MBNI-ALS) Provides Key Prognostic Insights.European journal of neurology · 2025Article
- Humanistic burden and medical care patterns of real-world patients with myasthenia gravis in Japan.Frontiers in neurology · 2025Article
- The Basis of Cognitive and Behavioral Dysfunction in Amyotrophic Lateral Sclerosis.Brain and behavior · 2024Review
- 'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.BMC neurology · 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
- Communicating visit information to family caregivers: How does method matter? A national survey.Palliative & supportive care · 2024Article
- Examining the Rationale for Studying Psychedelic-Assisted Psychotherapy for the Treatment of Caregiver Distress.Psychedelic medicine (New Rochelle, N.Y.) · 2023Review
- Life Experiences in Neuromuscular Tracheotomized Patients in Times of Covid-19.Journal of neuromuscular diseases · 2023Article
- Mild behavioral impairment as a potential marker of predementia risk states in motor neuron diseases.European journal of neurology · 2023Article
- The contribution of behavioral features to caregiver burden in FTLD spectrum disorders.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2022Article
- A cross-sectional evaluation of acceptability of an online palliative rehabilitation program for family caregivers of people with amyotrophic lateral sclerosis and cognitive and behavioral impairments.BMC health services research · 2022Article
- Home-Based Music Therapy to Support Bulbar and Respiratory Functions of Persons with Early and Mid-Stage Amyotrophic Lateral Sclerosis-Protocol and Results from a Feasibility Study.Brain sciences · 2022Article
- Quantifying the Value of Introducing an Oral Drug Delivery Option for Edaravone: A Review of Analyses Evaluating the Economic Impact of Oral versus Intravenous Formulations.ClinicoEconomics and outcomes research : CEOR · 2022Review
- Reflections of family caregivers and health professionals on the everyday challenges of caring for persons with amyotrophic lateral sclerosis and cognitive impairments: a qualitative study.Palliative care and social practice · 2022Article
Corrections and comments
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Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundBehavioral changes in patients with amyotrophic lateral sclerosis (ALS) mirror those found in frontotemporal dementia (FTD). Considering the high rate of neuropsychiatric symptoms found in ALS patients, this paper examines whether caregiver burden is associated with behavioral changes over and above the physical disability of patients with ALS, and if the presence of caregivers' depression, anxiety and stress also impacts on caregiver burden.
methods140 caregivers of patients with ALS participated in a postal survey investigating patients' neuropsychiatric symptoms (Cambridge Behaviour Inventory Revised CBI-R), motor function (Amyotrophic Lateral Sclerosis Functional Rating Scale Revised - ALSFRS-R), caregiver burden (Zarit Burden Interview), and caregiver mood (Depression, Anxiety and Stress Scale- DASS21). Seventy four percent of them were caregivers of patients with limb onset and 25.7% were caregivers of patients with bulbar onset.
resultsModerate to severe behavioral changes were reported in 10-40% of patients with ALS. The levels of depression, anxiety and stress in the caregivers reached 20%. Burden was high in 48% of the caregivers. The strongest predictor of high caregiver burden was ALS patients' abnormal behavior rather than physical disability, with an odds ratio of 1.4, followed by caregivers' stress.
conclusionsOur study has identified that behavioral changes (e.g. disinhibition, impulsivity) and caregiver stress have greater impact on caregiver burden than level and pattern of physical disability.
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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.