ArticleHealth expectations : an international journal of public participation in health care and health policy2019
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.
Article in Health expectations : an international journal of public participation in health care and health policy, 2019. 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
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
18 citing papers in PubMed, 1 synthesis or guideline pooled it, 32 citations in OpenAlex.
- Pooled it
- Clinical Meaningfulness of Donanemab in Early Symptomatic Alzheimer Disease: Data From the Randomized Phase 3 TRAILBLAZER-ALZ 2 Trial.Neurology. Clinical practice · 2026Trial
- Patient Preferences for Dementia Interventions: A Scoping Review With a Systematic Review of Medications and Choice-Based Methods.Journal of the American Geriatrics Society · 2026Article
- Patient- and Caregiver-Reported Impact of Symptoms in Alzheimer Disease, Mild Cognitive Impairment, and Dementia.Neurology. Clinical practice · 2025Article
- Aducanumab in Alzheimer's Disease: A Critical Update.Current medicinal chemistry · 2024Review
- Understanding treatment goals and their application in clinical trial design for patients with Alzheimer disease and caregivers.Drugs in context · 2024Article
- Outcome measures for Alzheimer's disease: A global inter-societal Delphi consensus.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023Article
- Experiences of and recommendations on clinical trial design in Alzheimer's disease from the participant's point of view: a mixed-methods study in two clinical trial centers in the Netherlands.Alzheimer's research & therapy · 2023Article
- Assessing What Matters to People Affected by Alzheimer's Disease: A Quantitative Analysis.Neurology and therapy · 2023Article
- Capturing Measures That Matter: The Potential Value of Digital Measures of Physical Behavior for Alzheimer's Disease Drug Development.Journal of Alzheimer's disease : JAD · 2023Review
- Meaningful benefits: a framework to assess disease-modifying therapies in preclinical and early Alzheimer's disease.Alzheimer's research & therapy · 2022Review
- Aducanumab produced a clinically meaningful benefit in association with amyloid lowering.Alzheimer's research & therapy · 2021Article
- A UK-Wide Study Employing Natural Language Processing to Determine What Matters to People about Brain Health to Improve Drug Development: The Electronic Person-Specific Outcome Measure (ePSOM) Programme.The journal of prevention of Alzheimer's disease · 2021Article
- Assessing what matters most to patients with or at risk for Alzheimer's and care partners: a qualitative study evaluating symptoms, impacts, and outcomes.Alzheimer's research & therapy · 2020Article
- 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
- Participant outcomes and preferences in Alzheimer's disease clinical trials: The electronic Person-Specific Outcome Measure (ePSOM) development program.Alzheimer's & dementia (New York, N. Y.) · 2018Review
- Incorporating individually defined brain health priorities in clinical trial outcomes: the electronic Person-Specific Outcome Measure approach in the United States.Alzheimer's & dementia (New York, N. Y.)Review
- Assessing the clinical meaningfulness of slowing CDR-SB progression with disease-modifying therapies for Alzheimer's disease.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundAlzheimer's disease (AD) is recognized as one of the greatest global public health challenges. There is increasing consensus that optimal disease modification using pharmaceuticals may best be achieved earlier in the disease continuum before symptoms occur. However, more needs to be understood about what outcomes are meaningful to potential participants in clinical trials within this preventative paradigm and how people make trade-offs between risks and benefits. The Electronic Person-Specific Outcome Measure (ePSOM) programme is developing an app to capture person-specific outcomes and preferences in clinical trials.
objectiveAs one phase in the ePSOM programme, this study explored what matters when developing new treatments to prevent AD and how trade-offs are made between risks and benefits, from three perspectives.
designFocus groups were conducted with people living with memory problems (n = 21) and healthy volunteers (n = 10), and telephone interviews with health and social care professionals (n = 10). Differences and overlap between the three groups were explored.
resultsOutcomes that matter lie in five key domains in relation to what matters in everyday life: Everyday Functioning; Relationships and Social Connections; Enjoying Life; Sense of Identity; and Alleviating Symptoms. Insights were gained into the significance of reducing the risk of developing dementia with drugs and the processes of weighing up risks versus benefits. DISCUSSION AND
conclusionsThe key domains identified are being used to inform the next stage of the ePSOM programme which is to develop a survey to be distributed nationally in the UK to explore these issues further.
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.