ArticleAlzheimer's & dementia (Amsterdam, Netherlands)2019
What outcomes are important to patients with mild cognitive impairment or Alzheimer's disease, their caregivers, and health-care professionals? A systematic review.
Article in Alzheimer's & dementia (Amsterdam, Netherlands), 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 61 papers, 3 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
61 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Setting individualised goals for people living with dementia and their family carers: A systematic review of goal-setting outcome measures and their psychometric properties.Dementia (London, England) · 2024Pooled it
- Chinese Herbal Medicine for Mild Cognitive Impairment: A Systematic Review of Randomized Controlled Trials.Frontiers in neurology · 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
- Clinical Meaningfulness of Donanemab in Early Symptomatic Alzheimer Disease: Data From the Randomized Phase 3 TRAILBLAZER-ALZ 2 Trial.Neurology. Clinical practice · 2026Trial
- The effect of working memory training on patient and informant reported executive function in mild cognitive impairment: an interventional study.BMC neurology · 2025Trial
- Outcomes reported in interventional studies for mild cognitive impairment: a scoping umbrella review to inform core outcome set development.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- Predictors of extreme future time perspective change in persons who learn an Alzheimer's disease biomarker test result.Aging & mental health · 2026Article
- Assessing needs and goals of dementia caregivers: development of the COPE-ING measure.BMC palliative care · 2026Article
- Provider and patient perspectives on the diagnosis and treatment of Alzheimer's disease: A global perspective from the Global Alzheimer's Leadership Series (GoALS).Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- The Lawton and Brody a half century later: A case for contemporary revision.The Clinical neuropsychologist · 2026Article
- The association between sarcopenia, sedentary behavior, and the motor cognitive risk syndrome: A Mendelian randomization study.Medicine · 2026Article
- Amyloid-related imaging abnormalities (ARIA) in anti-amyloid therapies for Alzheimer's disease: An update from the Alzheimer's Association ARIA workgroup.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Review
- [Optimization of the work of outpatient memory clinics under aspects of value-based healthcare-An approach from the Center for Memory Disorders of the University Hospital Cologne].Der Nervenarzt · 2026Article
- Clinical meaningfulness of anti-amyloid therapies in early Alzheimer's disease: Perspectives from the East and Southeast Asia region.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Review
- [Low care burden and high self-efficacy are essential for preparing family carers to care for people with dementia-findings from the TeleCareHub project].Neuropsychiatrie : Klinik, Diagnostik, Therapie und Rehabilitation : Organ der Gesellschaft Osterreichischer Nervenarzte und Psychiater · 2026Article
- Evaluating the role of visit audio recordings in triadic dementia care: study protocol.BMC geriatrics · 2025Article
- Linking traditional and technological activities of daily living: Building modern, adaptable measures of daily functioning.Journal of the International Neuropsychological Society : JINS · 2025Article
- Frequency and Clinical Outcomes Associated With Tau Positron Emission Tomography Positivity.JAMA · 2025Observational
- Time to align sensitive cognitive assessment with protein biomarkers in Alzheimer's disease.Journal of neuropsychology · 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
1 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
22 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionClinical trials involving patients with Alzheimer's disease (AD) continue to try to identify disease-modifying treatments. Although trials are designed to meet regulatory and registration requirements, many do not measure outcomes of the disease most relevant to key stakeholders.
methodsA systematic review sought research that elicited information from people with AD, their caregivers, and health-care professionals on which outcomes of the disease were important. Studies published in any language between 2008 and 2017 were included.
resultsParticipants in 34 studies described 32 outcomes of AD. These included clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) outcomes of the disease. DISCUSSION: Evidence elicited directly from the people most affected by AD reveals a range of disease outcomes that are relevant to them but are not commonly captured in clinical trials of new treatments.
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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.