ArticleAlzheimer's & dementia (New York, N. Y.)2021
Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis?
Article in Alzheimer's & dementia (New York, N. Y.), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.
What it found
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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
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Who cites it
21 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Time to nursing home admission and death in people with dementia: systematic review and meta-analysis.BMJ (Clinical research ed.) · 2025Pooled it
- Smartphone-based detection of subtle memory decline in prodromal Alzheimer's disease.NPJ digital medicine · 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
- Individualized prediction of clinical progression to dementia using plasma biomarkers in non-demented elderly.Alzheimer's research & therapy · 2025Article
- Anticipating the Future in an Uncertain Present: How Individuals Living With Medically Unexplained Cognitive Complaints Value Biomarker-Based Prognostics.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Exploring mutation carriers' preferences regarding onset and progression of disease predictions for adult-onset genetic neurodegenerative diseases: a qualitative interview study.Human genetics · 2025Article
- A scoping review of remote and unsupervised digital cognitive assessments in preclinical Alzheimer's disease.NPJ digital medicine · 2025Article
- Predicting Cognitive Decline in Amyloid-Positive Patients With Mild Cognitive Impairment or Mild Dementia.Neurology · 2024Article
- Tau-PET is superior to phospho-tau when predicting cognitive decline in symptomatic AD patients.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023Article
- Blood biomarkers for Alzheimer's disease in clinical practice and trials.Nature aging · 2023Review
- Precision medicine in neurodegeneration: the IHI-PROMINENT project.Frontiers in neurology · 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
- A longitudinal study on quality of life along the spectrum of Alzheimer's disease.Alzheimer's research & therapy · 2022Article
- Development of multivariable prediction models for institutionalization and mortality in the full spectrum of Alzheimer's disease.Alzheimer's research & therapy · 2022Article
- Development and design of a diagnostic report to support communication in dementia: Co-creation with patients and care partners.Alzheimer's & dementia (Amsterdam, Netherlands) · 2022Article
- Life satisfaction across the entire trajectory of Alzheimer's disease: A mediation analysis.Alzheimer's & dementia (Amsterdam, Netherlands) · 2022Article
- Identifying relevant outcomes in the progression of Alzheimer's disease; what do patients and care partners want to know about prognosis?Alzheimer's & dementia (New York, N. Y.) · 2021Article
- Down syndrome and Alzheimer's disease: A scoping review of functional performance and fall risk.Alzheimer's & dementia (New York, N. Y.)Article
- Measuring time saved in Alzheimer's disease: What is a meaningful slowing of progression?Alzheimer's & dementia (New York, N. Y.)Article
- How do we put meaning into meaningful benefit? Perspectives from the lived experience.Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
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Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPrognostic studies in the context of Alzheimer's disease (AD) mainly predicted time to dementia. However, it is questionable whether onset of dementia is the most relevant outcome along the AD disease trajectory from the perspective of patients and their care partners. Therefore, we aimed to identify the most relevant outcomes from the viewpoint of patients and care partners.
methodsWe used a two-step, mixed-methods approach. As a first step we conducted four focus groups in the Netherlands to elicit a comprehensive list of outcomes considered important by patients (
resultsThe top-10 lists of items most frequently mentioned as "most important" by patients and care partners were merged into one core outcome list, comprising 13 items. Both patients and care partners selected outcomes from the category "cognition" most often, followed by items in the categories "functioning and dependency" and "physical health." No items from the category "behavior and neuropsychiatry" and "social environment" ended up in our core list of relevant outcomes.
conclusionWe identified a core list of outcomes relevant to patients and care partner, and found that prognostic information related to cognitive decline, dependency, and physical health are considered most relevant by both patients and their care partners.
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.