ArticleBMC geriatrics2019
What is important to people living with dementia?: the 'long-list' of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions.
Article in BMC geriatrics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 4 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
29 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Evaluating the Use of Anxiety Patient-Reported Outcome Measures (PROMs) in Dementia Clinical Trials: A Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2026Pooled it
- An international core outcome set for primary progressive aphasia (COS-PPA): Consensus-based recommendations for communication interventions across research and clinical settings.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Pooled 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
- Development of the Observable Well-Being in Living With Dementia-Scale.American journal of Alzheimer's disease and other dementiasPooled it
- Article
- The economics of decision-making in dementia care and related life-limiting illness: a narrative review.Health economics review · 2026Review
- The Cost-Effectiveness of an Intervention to Preserve Independence in People With Dementia (Vs. No Intervention): A Decision-Analytic (Markov) Model Analysis.International journal of geriatric psychiatry · 2025Article
- 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
- Article
- Discussing methodological gaps in psychosocial intervention research for dementia: an opinion article from the INTERDEM Methodology Taskforce guided by the MRC framework.Frontiers in dementia · 2024Article
- Evaluating 'living well' with mild-to-moderate dementia: Co-production and validation of the IDEAL My Life Questionnaire.Dementia (London, England) · 2023Article
- Outcome measures for Alzheimer's disease: A global inter-societal Delphi consensus.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023Article
- Observations on strategies used by people with dementia to manage being assessed using validated measures: A pilot qualitative video analysis.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Improving continence management for people with dementia in the community in Aotearoa, New Zealand: Protocol for a mixed methods study.PloS one · 2023Article
- A suite of evaluation resources for Dementia Friendly Communities: Development and guidance for use.Dementia (London, England) · 2022Article
- Are nurse`s needs assessment methods robust enough to recognise palliative care needs in people with dementia? A scoping review.BMC nursing · 2022Article
- Development of a Psychological Intervention to Promote Meaningful Activity in People Living With Mild Dementia: An Intervention Mapping Approach.The Gerontologist · 2022Review
- Exploring outcome measures with cognitive stimulation therapies and how these relate to the experiences of people with dementia: A narrative literature review.Dementia (London, England) · 2022Review
- How do community based dementia friendly initiatives work for people with dementia and their caregivers, and why? A rapid realist review.International journal of geriatric psychiatry · 2022Review
- Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study.JMIR aging · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
13 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundCore outcome sets (COS) prioritise outcomes based on their importance to key stakeholders, reduce reporting bias and increase comparability across studies. The first phase of a COS study is to form a 'long-list' of outcomes. Key stakeholders then decide on their importance. COS reporting is described as suboptimal and this first phase is often under-reported. Our objective was to develop a 'long-list' of outcome items for non-pharmacological interventions for people with dementia living at home.
methodsThree iterative phases were conducted. First, people living with dementia, care partners, health and social care professionals, policymakers and researchers (n = 55) took part in interviews or focus groups and were asked which outcomes were important. Second, existing dementia trials were identified from the ALOIS database. 248 of 1009 pharmacological studies met the inclusion criteria. Primary and secondary outcomes were extracted from a 50% random sample (n = 124) along with eight key reviews/qualitative papers and 38 policy documents. Third, extracted outcome items were translated onto an existing qualitative framework and mapped into domains. The research team removed areas of duplication and refined the 'long-list' in eight workshops.
resultsOne hundred seventy outcome items were extracted from the qualitative data and literature. The 170 outcome items were consolidated to 54 in four domains (Self-Managing Dementia Symptoms, Quality of Life, Friendly Neighbourhood & Home, Independence).
conclusionsThis paper presents a transparent blueprint for 'long-list' development. Though a useful resource in their own right, the 54 outcome items will be distilled further in a modified Delphi survey and consensus meeting to identify core outcomes.
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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.