ArticleJournal of the American Geriatrics Society2020
Selecting Outcomes to Ensure Pragmatic Trials Are Relevant to People Living with Dementia.
Article in Journal of the American Geriatrics Society, 2020. 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.
- The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Pooled it
- A psychosocial goal-setting and manualised support intervention for independence in dementia (NIDUS-Family) versus goal setting and routine care: a single-masked, phase 3, superiority, randomised controlled trial.The lancet. Healthy longevity · 2024Trial
- Barriers to identifying residents with dementia for embedded pragmatic trials: A call to action.Journal of the American Geriatrics Society · 2022Trial
- Nursing home performance in a trial to reduce hospitalizations: Implications for future trials.Journal of the American Geriatrics Society · 2021Trial
- Gaps in the coordination of care for people living with dementia.Journal of the American Geriatrics Society · 2024Article
- Selecting outcomes for pragmatic clinical trials in dementia care: The IMPACT Collaboratory iLibrary.Journal of the American Geriatrics Society · 2024Article
- Pragmatic Clinical Trials for Dementia Care: Experience from the First 5 Years of the IMPACT Collaboratory.Generations (San Francisco, Calif.) · 2024Article
- Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review.Journal of the American Geriatrics Society · 2023Article
- Protecting seriously ill populations during pragmatic clinical trials.Journal of the American Geriatrics Society · 2023Article
- Considerations When Designing and Implementing Pragmatic Clinical Trials That Include Older Hispanics.Ethnicity & disease · 2023Article
- Moving toward more person-centered dementia care.International psychogeriatrics · 2022Article
- Dementia patient and caregiver relevant outcomes currently being reported by adult day service centers in the United States.Alzheimer's & dementia (New York, N. Y.) · 2022Article
- Emergency department care transition barriers: A qualitative study of care partners of older adults with cognitive impairment.Alzheimer's & dementia (New York, N. Y.) · 2022Article
- Measurement to improve care and outcomes for persons with Alzheimer's disease and dementia.Alzheimer's & dementia (New York, N. Y.) · 2022Article
- Outcomes valued by people living with dementia and their care partners: protocol for a qualitative systematic review and synthesis.BMJ open · 2021Article
- What Clinicians Need to Know About Measurement.Journal of the American Medical Directors Association · 2021Article
- Recommendations to Deliver Person-Centered Long-Term Care for Persons Living With Dementia.Journal of the American Medical Directors Association · 2021Article
- Reflections on the IJHPR's article collection on dementia.Israel journal of health policy research · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
Outcome measures for embedded pragmatic clinical trials (ePCTs) should reflect the lived experience of people living with dementia (PLWD) and their caregivers, yet patient- and caregiver-reported outcomes (PCROs) are rarely available in large clinical and administrative data sources. Although pragmatic methods may lead to use of existing administrative data rather than new data collected directly from PLWD, interventions are truly impactful only when they change outcomes prioritized by PLWD and their caregivers. The Patient- and Caregiver-Reported Outcomes Core (PCRO Core) of the IMbedded Pragmatic Alzheimer's Disease (AD) and AD-Related Dementias Clinical Trials (IMPACT) Collaboratory aims to promote optimal use of outcomes relevant to PLWD and their caregivers in pragmatic trials. The PCRO Core will address key scientific challenges limiting outcome measurement, such as gaps in existing measures, methodologic constraints, and burdensome data capture. PCRO Core investigators will create a searchable library of AD/AD-related dementias (ADRD) clinical outcome measures, including measures in existing data sources with potential for AD/ADRD ePCTs, and will support best practices in measure development, including pragmatic adaptation of PCROs. Working together with other Cores and Teams within the IMPACT Collaboratory, the PCRO Core will support investigators to select from existing outcome measures, and to innovate in methods for measurement and data capture. In the future, the work of the IMPACT Collaboratory may galvanize broader embedded use of outcomes that matter to PLWD and their care partners in large health systems. J Am Geriatr Soc 68:S55-S61, 2020.
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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.