ArticleJournal of neurology2017
Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival.
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 22 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.
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Who cites it
22 citing papers in PubMed.
- Pan-Asian consortium for treatment and research in ALS (PACTALS) guidelines for management of amyotrophic lateral sclerosis.The Lancet regional health. Western Pacific · 2025Review
- Pathophysiology, Clinical Heterogeneity, and Therapeutic Advances in Amyotrophic Lateral Sclerosis: A Comprehensive Review of Molecular Mechanisms, Diagnostic Challenges, and Multidisciplinary Management Strategies.Life (Basel, Switzerland) · 2025Review
- Changes and interruptions during COVID-19: caregivers of people with brain health challenges-A qualitative analysis.Frontiers in dementia · 2024Article
- Blink Reflex Examination in Patients with Amyotrophic Lateral Sclerosis Compared to Diseases Affecting the Peripheral Nervous System and Healthy Controls.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
- How do people with MND and caregivers experience a digital mental health intervention? A qualitative study.Frontiers in psychiatry · 2023Article
- Psychological Support for Family Caregivers of Patients With Amyotrophic Lateral Sclerosis at the Time of the Coronavirus Disease 2019 Pandemic: A Pilot Study Using a Telemedicine Approach.Frontiers in psychiatry · 2022Article
- Informal Caregivers in Amyotrophic Lateral Sclerosis: A Multi-Centre, Exploratory Study of Burden and Difficulties.Brain sciences · 2021Article
- Prediction of caregiver quality of life in amyotrophic lateral sclerosis using explainable machine learning.Scientific reports · 2021Article
- Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): A High Caregiver Burden and Drastic Consequences on Caregivers' Lives.Brain sciences · 2021Article
- One Year Trajectory of Caregiver Burden in Parkinson's Disease and Analysis of Gender-Specific Aspects.Brain sciences · 2021Article
- Impact of family caregivers' awareness of the prognosis on their quality of life/depression and those of patients with advanced cancer: a prospective cohort study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2021Article
- Healthcare Utilisation and Satisfaction with Care in Patients with Amyotrophic Lateral Sclerosis - An Observational Study.Journal of neuromuscular diseases · 2021Observational
- Quality of Life of Cohabitants of People Living with Acne.Acta dermato-venereologica · 2020Article
- Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient's Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers.International journal of environmental research and public health · 2020Article
- Sleep and Sleep Disruption in Amyotrophic Lateral Sclerosis.Current neurology and neuroscience reports · 2020Review
- Article
- Group interventions for amyotrophic lateral sclerosis caregivers in Ireland: a randomised controlled trial protocol.BMJ open · 2019Article
- An observational study on quality of life and preferences to sustain life in locked-in state.Neurology · 2019Observational
- Sleep disturbances in patients with amyotrophic lateral sclerosis: current perspectives.Nature and science of sleep · 2019Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Few studies in amyotrophic lateral sclerosis (ALS) have profiled disease-specific features of the condition in conjunction with assessment of caregivers' burden, distress, quality of life, and investigated patient survival. Eighty-four ALS patients and their primary caregivers were enrolled. Patients completed ALS-specific measures of physical and cognitive function, while caregivers completed measures of anxiety, depression, caregiver burden, and quality of life. Patient-caregiver dyads were interviewed about their health-service utilisation. Survival data were obtained through the Irish register for ALS. Participants were dichotomised into low/high groups according to the severity of self-reported caregiver burden, based on statistically derived cut-off scores. High-burdened caregivers (n = 43) did not significantly differ from low-burdened caregivers (n = 41) with respect to disease-specific characteristics, i.e., ALSFRS-R, bulbar- or spinal-onset ALS, disease duration, or survival data. However, significant differences were reported on subjective measures of anxiety (p < 0.000), depression (p < 0.001), distress (p < 0.000), and quality of life (p < 0.000). These data demonstrate the limited impact of ALS patient-related variables, i.e., ALSFRS-R and onset, on caregiver burden in ALS, and identify the importance of the psychological composition of caregivers. This study suggests that the subjective experience of individual caregivers is an important factor influencing the severity of experienced caregiver burden.
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Registered trials
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