SynthesisPalliative medicine2018
Caregiver burden in amyotrophic lateral sclerosis: A systematic review.
Synthesis in Palliative medicine, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT06566651 (Emotion and Interoception Processing in ALS), which is not on this map. Cited by 79 papers, 5 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.
Emotion and Interoception Processing in ALS
Who cites it
79 citing papers in PubMed, 5 syntheses or guidelines pooled it.
- 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
- Quality of life, cognitive and behavioural impairment in people with motor neuron disease: a systematic review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024Pooled it
- Evidence-based position paper on Physical and Rehabilitation Medicine practice for people with amyotrophic lateral sclerosis.European journal of physical and rehabilitation medicine · 2022Pooled it
- Determinants of overburdening among informal carers: a systematic review.BMC geriatrics · 2020Pooled it
- The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review.Palliative medicine · 2020Pooled it
- Preferences for Healthcare Delivery in Amyotrophic Lateral Sclerosis (ALS): A Survey of Patients and Caregivers in the United States.The patient · 2026Observational
- 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
- The effect of tele-interventions on family caregiver burden: a systematic review and meta-analysis.BMC nursing · 2026Article
- Between guidelines and reality: expert neurologists' perspectives on structural resources for ALS care in Germany.Neurological research and practice · 2026Article
- Approaching Serious Illness Conversations in Amyotrophic Lateral Sclerosis Using Telehealth: A Practical Guide.Neurology. Clinical practice · 2026Review
- A Short Version of Carers' Quality of Life Questionnaire for Parkinsonism: Data from Progressive Supranuclear Palsy Network.Movement disorders clinical practice · 2026Article
- The burden of care: Health and wellbeing of informal caregivers of people with amyotrophic lateral sclerosis.Palliative & supportive care · 2026Article
- Rehabilitation in Neuromuscular Diseases: Best Turkish Practice Recommendations by Multidisciplinary Experts.Acta neurologica Belgica · 2026Review
- Living with Amyotrophic Lateral Sclerosis: Exploring what matters to patients and caregivers through their experiences.Palliative care and social practice · 2026Article
- E-Health & Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 3rd eNMD Congress: Pisa, Italy, 29-30 October 2021: Remote Monitoring: New Solutions for New Avenues in Neuromuscular Disorders.Journal of neuromuscular diseases · 2026Article
- Huntington's disease caregivers: A qualitative exploration of caregivers experience.Journal of health psychology · 2026Article
- Caregivers in amyotrophic lateral sclerosis (ALS): preliminary results between paid care and family care.Health psychology and behavioral medicine · 2026Article
- Greek Registry for Amyotrophic Lateral Sclerosis (ALS-GR): An Observational Cohort of Individuals With ALS Across 11 Specialized Centers in Greece.European journal of neurology · 2025Observational
- 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
19 more citing papers are in PubMed but not listed here.
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInformal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver burden is needed in order to develop supportive interventions.
aimTo evaluate the evidence on patient and caregiver factors associated with caregiver burden in amyotrophic lateral sclerosis informal caregivers.
designA systematic review. DATA SOURCES: Four electronic databases were searched up to 2017. Studies that investigated quantitative relations between patient or caregiver factors and caregiver burden were included. The overall quality of evidence for factors was assessed using the Grading of Recommendations Assessment, Development and Evaluation approach.
resultsA total of 25 articles were included. High quality of evidence was found for the relation between caregiver burden and the factor "behavioral impairments." Moderate quality of evidence was found for the relations between caregiver burden and the factors "feelings of depression" of the caregiver and "physical functioning" of the patient. The remaining rated caregiver factors-"feelings of anxiety," "distress," "social support," "family functioning," and "age"-and patient factors-"bulbar function," "motor function," "respiratory function," "disease duration," "disinhibition," "executive functioning," "cognitive functioning," "feelings of depression," and "age"-showed low to very low quality of evidence for their association with caregiver burden.
conclusionHigher caregiver burden is associated with greater behavioral and physical impairment of the patient and with more depressive feelings of the caregiver. This knowledge enables the identification of caregivers at risk for caregiver burden and guides the development of interventions to diminish caregiver burden.
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.