Evidence map›Paper›PMID 41461866›Full record

ArticleScientific reports2025

An international cross-sectional study of dementia researchers' own perspectives on patient and public involvement.

Peter Fusdahl, Daniel Camilo Hernandez, Jonathan Patricio Baldera, Arvid Rongve, Ara Khachaturian, Dag Aarsland, Ingelin Testad, Miguel Germán Borda

Abstract read
In one paragraph

Article in Scientific reports, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Peter FusdahlCentre for Age-Related Medicine (SESAM), Stavanger University Hospital, Stavanger, Norway. pefus0399@uib.no.
Daniel Camilo HernandezSemillero de Neurociencias y Envejecimiento, Ageing Institute, Medical School, Pontificia Universidad Javeriana, Bogotá, Colombia.
Jonathan Patricio BalderaCentre for Age-Related Medicine (SESAM), Stavanger University Hospital, Stavanger, Norway.
Arvid RongveDepartment of Research and Innovation, Haugesund Hospital, Haugesund, Norway.
Ara KhachaturianCampaign to Prevent Alzheimer's Disease, Potomac, MD, USA.
Dag AarslandCentre for Age-Related Medicine (SESAM), Stavanger University Hospital, Stavanger, Norway.
Ingelin TestadCentre for Age-Related Medicine (SESAM), Stavanger University Hospital, Stavanger, Norway.
Miguel Germán BordaCentre for Age-Related Medicine (SESAM), Stavanger University Hospital, Stavanger, Norway.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Patient and Public Involvement (PPI) can enhance the quality and relevance of health research. However, its implementation remains uneven across regions and research fields. This study explores how dementia and aging researchers perceive PPI's impact on their work. A cross-sectional survey was distributed to 392 researchers in Europe, Latin America, the USA, and Canada. Following multiple expert reviews, native speaker input, and pilot testing, the final survey was administered. Quantitative data were analyzed using descriptive statistics, group comparisons, and logistic regression models. Of 392 questionnaires, 91 were returned (23.2% response rate). Researchers in Europe, the USA, and Canada reported greater familiarity with PPI than those in Latin America. Notably, 45.1% of respondents selected "I prefer not to answer" when asked about PPI's role in their research; this was more common among Latin American participants, who also reported lower PPI knowledge. Logistic regression revealed that familiarity with PPI was associated with having more research experience, submitting more grant applications, better access to PPI groups, and using PPI to aid recruitment. These findings point to gaps in the awareness and application of PPI in aging and dementia research, with many researchers expressing uncertainty about its value. Regional disparities underscore the need for consistent, standardized approaches to PPI. Future efforts should focus on closing the gap between theoretical familiarity and active implementation to improve research quality and public engagement, particularly in under-resourced settings.

Indexed as

Community ParticipationDementiaPatient ParticipationResearch PersonnelAdultCanadaCross-Sectional StudiesEuropeFemaleHumansLatin AmericaMaleMiddle AgedSurveys and QuestionnairesUnited StatesDementiaPPIPublic engagementRegional disparitiesResearch quality

Identifiers

PMID41461866
PMCPMC12852740

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.