ArticleHealth and quality of life outcomes2020
Individual quality of life in spousal ALS patient-caregiver dyads.
Article in Health and quality of life outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled it.
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
18 citing papers in PubMed, 1 synthesis or guideline pooled 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
- 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
- Living with Amyotrophic Lateral Sclerosis: Exploring what matters to patients and caregivers through their experiences.Palliative care and social practice · 2026Article
- An evaluation of the ALSSQOL-SF in the Malaysian context through cognitive interviewing.Neurodegenerative disease management · 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
- Accessing and Receiving Speech-Language Pathology Services at the Multidisciplinary Amyotrophic Lateral Sclerosis Clinic: An Exploratory Qualitative Study of Patient Experiences and Needs.Journal of speech, language, and hearing research : JSLHR · 2024Article
- A Model-Based Economic Evaluation of Hypothetical Treatments for Amyotrophic Lateral Sclerosis in the UK: Implications for Pricing of New and Emerging Health Technologies.PharmacoEconomics · 2024Article
- Incidence of amyotrophic lateral sclerosis-associated genetic variants: a clinic-based study.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2024Article
- Nurses' challenges when supporting the family of patients with ALS in specialized palliative home care: A qualitative study.International journal of qualitative studies on health and well-being · 2023Article
- Distinct dyadic quality of life profiles among patient-caregiver dyads with advanced lung cancer: a latent profile analysis.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2023Article
- Prospective study to evaluate quality of life in amyotrophic lateral sclerosis.Scientific reports · 2023Article
- Quality of Life in Amyotrophic Lateral Sclerosis Patients and Care Burden of Caregivers in Sardinia during COVID-19 Pandemic.Healthcare (Basel, Switzerland) · 2023Article
- Article
- Quality of life and mental health in the locked-in-state-differences between patients with amyotrophic lateral sclerosis and their next of kin.Journal of neurology · 2022Article
- A Clinical Decision Support System for the Prediction of Quality of Life in ALS.Journal of personalized medicine · 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
- Family Caregiver Suffering in Caring for Patients with Amyotrophic Lateral Sclerosis in Korea.International journal of environmental research and public health · 2021Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundQuality of life is a basic goal of health and social care. The majority of people with Amyotrophic Lateral Sclerosis (ALS) are cared for at home by family caregivers. It is important to recognize the factors that contribute to quality of life for individuals to better understand the lived experiences in a condition for which there is currently no curative treatment.
aimTo explore individual quality of life of people with ALS and their informal caregivers over time.
methodsOver three semi-structured home interviews, 28 patient-caregiver dyads provided information on a range of demographic and clinical features, psychological distress, caregiver burden, and individual quality of life. Quality of life data were analysed using quantitative and qualitative methods with integration at the analysis and interpretation phases.
resultsIndividual Quality of Life was high for patients and caregivers across the interviews series, and higher among patients than their care partners at each time point. Family, hobbies and social activities were the main self-defined contributors to quality of life. The importance of health declined relative to other areas over time. Friends and finances became less important for patients, but were assigned greater importance by caregivers across the illness trajectory. Psychological distress was higher among caregivers. Caregiver burden consistently increased.
conclusionThe findings from this study point to the importance of exploring and monitoring quality of life at an individual level. Self-defined contributory factors are relevant to the individual within his/her context. As an integrated outcome measure individual quality of life should be assessed and monitored as part of routine clinical care during the clinical encounter. This can facilitate conversations between health care providers, patients and families, and inform interventions and contribute to decision support mechanisms. The ascertainment of self-defined life quality, especially in progressive neurodegenerative conditions, mean health care professionals are in a better position to provide person-centred care.
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