SynthesisBMJ open2017
Instruments measuring the disease-specific quality of life of family carers of people with neurodegenerative diseases: a systematic review.
Synthesis in BMJ open, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 2 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
25 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN.Health and quality of life outcomes · 2022Pooled it
- How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures.PloS one · 2018Pooled it
- Developing a Quality-of-Life Measure for Carers of People with Dementia for Use in Economic Evaluations: Results from the COCOON Project.PharmacoEconomics · 2026Article
- Reply to: Severity-Based and Family-Centered Approaches to Deep Brain Stimulation in GNAO1-Related Disorders.Movement disorders clinical practice · 2026Article
- A narrative review of clinical and non-clinical determinants of health-related quality of life in advanced Parkinson's disease.Journal of neural transmission (Vienna, Austria : 1996) · 2026Review
- Assessing quality of life-a scoping review of studies presenting quality of life instruments for informal caregivers of persons with dementia.BMC geriatrics · 2025Article
- Assessing the impact of day programs on individuals living with dementia and their family/friend caregivers (AIDA-DemCare): protocol of a prospective cohort study combined with a qualitative evaluation.BMC public health · 2025Article
- Article
- Living well while providing support: validation of LTCQ-Carer for assessing informal carers' quality of life.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- Validity and Reliability of the Korean Version of the Parkinson's Disease Questionnaire-Carer.Journal of clinical neurology (Seoul, Korea) · 2023Article
- Carer-reported measures for a dementia registry: A systematic scoping review and a qualitative study.Australasian journal on ageing · 2023Article
- Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches.Health and quality of life outcomes · 2022Article
- Analysis of Transition of Patients with Parkinson's Disease into Institutional Care: A Retrospective Pilot Study.Brain sciences · 2021Article
- Carers' experiences of assistive technology use in dementia care: a cross sectional survey.BMC geriatrics · 2021Article
- Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR).The Gerontologist · 2021Article
- Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia.Palliative medicine · 2021Article
- Disease severity accounts for minimal variance of quality of life in people with dementia and their carers: analyses of cross-sectional data from the MODEM study.BMC geriatrics · 2020Article
- Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2019Article
- Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia.The patient · 2019Article
- Understanding the quality of life of family carers of people with dementia: Development of a new conceptual framework.International journal of geriatric psychiatry · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveNeurodegenerative diseases, such as dementia, have a profound impact on those with the conditions and their family carers. Consequently, the accurate measurement of family carers' quality of life (QOL) is important. Generic measures may miss key elements of the impact of these conditions, so using disease-specific instruments has been advocated. This systematic review aimed to identify and examine the psychometric properties of disease-specific outcome measures of QOL of family carers of people with neurodegenerative diseases (Alzheimer's disease and other dementias; Huntington's disease; Parkinson's disease; multiple sclerosis; and motor neuron disease).
designSystematic review.
methodsInstruments were identified using 5 electronic databases (PubMed, PsycINFO, Web of Science, Scopus and the International Bibliography of the Social Sciences (IBSS)) and lateral search techniques. Only studies which reported the development and/or validation of a disease-specific measure for adult family carers, and which were written in English, were eligible for inclusion. The methodological quality of the included studies was evaluated using the COnsensus based Standards for the selection of health Measurement Instruments (COSMIN) checklist. The psychometric properties of each instrument were examined.
results676 articles were identified. Following screening and lateral searches, a total of 8 articles were included; these reported 7 disease-specific carer QOL measures. Limited evidence was available for the psychometric properties of the 7 instruments. Psychometric analyses were mainly focused on internal consistency, reliability and construct validity. None of the measures assessed either criterion validity or responsiveness to change.
conclusionsThere are very few measures of carer QOL that are specific to particular neurodegenerative diseases. The findings of this review emphasise the importance of developing and validating psychometrically robust disease-specific measures of carer QOL.
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.