Evidence map›Paper›PMID 41984851›Full record

ArticlePloS one2026

How are adults with intellectual and/or developmental disabilities represented, included and engaged in cancer research: A scoping review protocol.

Rebecca L W Hansford, Sandra Halliday, Nicole Bobbette, Laura Mullins, Christina Godfrey, Anna Przednowek, Preeyaporn Srasuebkul, Martin McMahon, Alyson L Mahar

Abstract read
In one paragraph

Article in PloS one, 2026. 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

9 authors.

Rebecca L W HansfordSchool of Nursing, Queen's University, Kingston, Ontario, Canada.ORCID https://orcid.org/0000-0002-3196-6583
Sandra HallidayQueen's University Library, Queen's University, Kingston, Ontario, Canada.ORCID https://orcid.org/0000-0003-3357-3983
Nicole BobbetteSchool of Rehabilitation Sciences, Queen's University, Kingston, Ontario, Canada.
Laura MullinsDepartment of Applied Disability Studies, Brock University, St Catharines, Ontario, Canada.ORCID https://orcid.org/0000-0002-8390-2653
Christina GodfreySchool of Nursing, Queen's University, Kingston, Ontario, Canada.
Anna PrzednowekSchool of Social Work, Nipissing University, North Bay, Ontario, Canada.ORCID https://orcid.org/0000-0002-9732-2887
Preeyaporn SrasuebkulSchool of Medicine and Health; University of New South Wales, Sydney, Australia.ORCID https://orcid.org/0000-0002-6252-1368
Martin McMahonSchool of Nursing and Midwifery; Trinity College Dublin, Dublin, Ireland.ORCID https://orcid.org/0000-0002-3340-9537
Alyson L MaharSchool of Nursing, Queen's University, Kingston, Ontario, Canada.ORCID https://orcid.org/0000-0002-6862-3760

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Cancer research has shifted to highlight and empower the voices and experiences of patients in informing and guiding research. Adults with intellectual and/or developmental disabilities experience worse cancer-related outcomes compared to those without disabilities, including lower screening rates, more advanced stages at diagnosis, and lower survival likelihood. However, limited research has been conducted on how they are involved in cancer research. To improve how cancer-related care is provided to adults with intellectual and/or developmental disabilities, it is imperative that they are included in research that affects them. The objective of this scoping review is to explore and synthesize how adults with intellectual and/or developmental disabilities are represented, involved, and engaged in cancer research. This study will follow the JBI methodology for scoping reviews. Embase, Medline, PsycINFO and CINAHL will be searched to identify published studies. Based on timing of the introduction of the United Nations on the Rights of Persons with Disabilities, searches will be conducted from 2006 onwards. There will be no language restrictions. Eligible studies will include primary cancer-related research that focuses on adults with intellectual and/or developmental disabilities and/or those involved in their care, including qualitative, quantitative, and mixed methods research. Two independent reviewers will screen titles, abstracts, conduct full text reviews, and extract information on how participants were recruited in research, and/or identified in administrative quantitative studies, and how they were involved. Information will also be extracted on how adults with intellectual and/or developmental disabilities were involved in the study based on the International Association for Public Participation spectrum (inform, consult, involve, collaborate, and empower). Our findings will help us better understand how adults with intellectual and/or developmental disabilities are engaged in cancer research and identify potential next steps for enhancing accessibility and inclusion in cancer research.

Indexed as

Biomedical ResearchDevelopmental DisabilitiesIntellectual DisabilityNeoplasmsAdultHumansResearch DesignScoping Reviews as Topic

Identifiers

PMID41984851
PMCPMC13082627

What OpenQuestion holds

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LicenceCC BY
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Registered trials

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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.