ArticleTrials2018
Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions.
Article in Trials, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 3 of them syntheses that pooled it.
What it found
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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
24 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers.BMC medical research methodology · 2022Pooled it
- A Core Outcome Set for Nonpharmacological Community-Based Interventions for People Living With Dementia at Home: A Systematic Review of Outcome Measurement Instruments.The Gerontologist · 2021Pooled it
- Palliative care for people with dementia living at home: A systematic review of interventions.Palliative medicine · 2019Pooled it
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- Perspectives of paediatricians on collecting children's and caregivers' preferences for outcomes relevant to patients: a qualitative interview study in China.BMJ paediatrics open · 2026Article
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Developing a core outcome set for intervention studies in post stroke cognitive impairment (COS-PSCI): a protocol.BMJ open · 2026Article
- Home- and Community-Based Service Use and Preferences Among Post-9/11 Veterans With or at High Risk of Alzheimer Disease and Related Dementia and Their Caregivers: Protocol for a Mixed Methods Observational Study.JMIR research protocols · 2026Observational
- Making outcome measures matter: Why should "what matters to people living with dementia" matter to dementia researchers?Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Review
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- Article
- Development of a Bariatric Surgery Core Data Set for an International Registry.Obesity surgery · 2023Article
- Social Prescribing Outcomes for Trials (SPOT): Protocol for a modified Delphi study on core outcomes.PloS one · 2023Article
- Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.PloS one · 2023Article
- Co-designing an Adaption of a Mobile App to Enhance Communication, Safety, and Well-being Among People Living at Home With Early-Stage Dementia: Protocol for an Exploratory Multiple Case Study.JMIR research protocols · 2021Article
- Conducting public involvement in dementia research: The contribution of the European Working Group of People with Dementia to the ROADMAP project.Health expectations : an international journal of public participation in health care and health policy · 2021Review
- Outcomes tested in non-pharmacological interventions in mild cognitive impairment and mild dementia: a scoping review.BMJ open · 2020Article
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- What matters to people with memory problems, healthy volunteers and health and social care professionals in the context of developing treatment to prevent Alzheimer's dementia? A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2019Article
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Corrections and comments
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Authors and funding
18 authors.
Funding
Abstract
backgroundThe key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia. METHODS/
designDrawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design: 1 Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes. 2 Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS. 3 A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance. 4 A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS. DISCUSSION: To the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions.
trial registrationThe study is registered on the COMET initiative, registered in 2014 at comet-initiative.org .
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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.