ReviewAlzheimer's & dementia (New York, N. Y.)2018
Participant outcomes and preferences in Alzheimer's disease clinical trials: The electronic Person-Specific Outcome Measure (ePSOM) development program.
Review in Alzheimer's & dementia (New York, N. Y.), 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.
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
11 citing papers in PubMed.
- Co-Designing and Evaluating a Multimodal Digital Application to Enable People With Dementia to Self-Report Quality of Life Patient-Reported Outcome Measures: Co-Design Study and Summative Evaluation.Journal of participatory medicine · 2026Article
- Cognitive and Patient-Reported Outcome Measures in LGI-1-IgG Autoimmune Encephalitis.Annals of clinical and translational neurology · 2025Article
- Pain Assessment for Patients with Dementia and Communication Impairment: Feasibility Study of the Usage of Artificial Intelligence-Enabled Wearables.Sensors (Basel, Switzerland) · 2024Article
- Towards a lifelong personalized brain health program: empowering individuals to define, pursue, and monitor meaningful outcomes.Frontiers in neurology · 2024Article
- Intelligent System for Detecting Deterioration of Life Satisfaction as Tool for Remote Mental-Health Monitoring.Sensors (Basel, Switzerland) · 2022Article
- 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
- Hippocampal subfields and decline in activities of daily living in Alzheimer's disease and dementia with Lewy bodies.Neurodegenerative disease management · 2020Article
- 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
- Tackling gaps in developing life-changing treatments for dementia.Alzheimer's & dementia (New York, N. Y.) · 2019Review
- 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
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionCurrent pharmacological interventions for Alzheimer's dementia delay symptom progression for about a year. Although the outcomes in earlier disease states may include changes in biomarkers, the clinical effectiveness of any intervention can ultimately only be assessed by a patient's self-reported well-being. A better understanding of earlier manifestations of Alzheimer's disease and the drive for relevant outcome measures, allied to technological advances in artificial intelligence, have mediated the electronic Person-Specific Outcome Measure (ePSOM) development program.
methodsThere are 4 sequential stages in the ePSOM development program-(1) literature review, (2) focus group study, (3) national survey, and (4) development of an app for capturing person-specific outcomes. Here, we report the overall approach to the program incorporating our literature review on patient-reported outcome measures and patient preferences in the Alzheimer's disease population.
resultsAlzheimer's disease trials do not use any patient-reported outcome measures. Quality of life measures are often used as proxies for this, but they do not capture individual needs. Therefore, trials currently fail to reflect the participant's aspirations for effect but rather default to clinicostatistical measure of cognition and function. There is no implementation of patient preferences despite evidence that understanding preferences may influence adherence to treatment. DISCUSSION: It is important to consider preferences for an intervention and use PROMs for the measure of effectiveness given that both risk and benefit are judged by the recipient of the treatment. The ePSOM development program will deliver the methodology for incorporating meaningful outcomes in clinical trials to expand upon current biological and clinical measurements of effectiveness.
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