Evidence map›Paper›PMID 42870373›Full record

ArticleCancer reports (Hoboken, N.J.)2026

Patient and Caregiver Reported Barriers to Cancer Clinical Trial Participation: A Scoping Review.

Sarah Scruton, Chisato Ito, Julia Bohnen, Robin Urquhart, Chiquita Hessels, Summer Konechny, Rosilene Kraft, Randy Thompson, Cheryl Ho, Deirdre Weymann and 8 more

Abstract readScoping Review
In one paragraph

Article in Cancer reports (Hoboken, N.J.), 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

18 authors.

Sarah ScrutonCancer Outcomes Research Program, Nova Scotia Health, Halifax, Nova Scotia, Canada.ORCID https://orcid.org/0009-0006-1260-2043
Chisato ItoFaculty of Health Sciences, Simon Fraser University, Vancouver, British Columbia, Canada.ORCID https://orcid.org/0000-0002-8349-8224
Julia BohnenBC Children's Hospital Research Institute, Vancouver, British Columbia, Canada.
Robin UrquhartCancer Outcomes Research Program, Nova Scotia Health, Halifax, Nova Scotia, Canada.ORCID https://orcid.org/0000-0001-8864-5716
Chiquita HesselsLi Fraumeni Syndrome Association Canada, Canada.
Summer Konechnypan-Canadian organization, Canada.
Rosilene Kraftpan-Canadian organization, Canada.ORCID https://orcid.org/0000-0002-5260-4733
Randy Thompsonpan-Canadian organization, Canada.
Cheryl HoDepartment of Medical Oncology, BC Cancer, Vancouver, British Columbia, Canada.ORCID https://orcid.org/0000-0002-5922-3984
Deirdre WeymannFaculty of Health Sciences, Simon Fraser University, Vancouver, British Columbia, Canada.ORCID https://orcid.org/0000-0002-3072-5657
Yvonne BombardGenomics Health Services Research Program, Unity Health Toronto, Toronto, Ontario, Canada.
Emanuel KrebsPopulation Health Sciences, BC Cancer Research Institute, Vancouver, British Columbia, Canada.ORCID https://orcid.org/0000-0002-6590-8728
Avram DenburgInstitute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.ORCID https://orcid.org/0000-0003-0039-0742
Timothy P HannaDivision of Cancer Care and Epidemiology, Sinclair Cancer Research Institute, Kingston, Ontario, Canada.ORCID https://orcid.org/0000-0003-3228-6042
Howard J LimDepartment of Medical Oncology, BC Cancer, Vancouver, British Columbia, Canada.
Saadia ShareenFaculty of Health Sciences, Simon Fraser University, Vancouver, British Columbia, Canada.ORCID https://orcid.org/0009-0001-6638-2035
Dean A RegierPopulation Health Sciences, BC Cancer Research Institute, Vancouver, British Columbia, Canada.ORCID https://orcid.org/0000-0001-8876-0511
Samantha PollardFaculty of Health Sciences, Simon Fraser University, Vancouver, British Columbia, Canada.ORCID https://orcid.org/0000-0002-3070-2092

Funding

Terry Fox Research Institute Patient Voices in Research Initiative
6 · The paper itself

Abstract

backgroundThe development of cancer treatments relies on patient participation in clinical trials, yet poor recruitment and retention hinder evidence generation. There exists an urgent need for trial designs that address patient-identified barriers, informational gaps, and concerns. The goal of this evidence synthesis was to identify patient- and caregiver-reported barriers to trial participation and retention.

methodsWe conducted a search in PubMed, Ovid MEDLINE, CINAHL Complete, Scopus, and Web of Science to identify studies describing patient- and caregiver-reported barriers to cancer clinical trial participation. Eligible studies included qualitative or quantitative research published in the English language that reported barriers experienced by individuals with cancer or their caregivers. Four authors screened titles and abstracts, followed by full-text review and data abstraction of included studies. Qualitative results were summarized narratively, and quantitative findings were described using descriptive statistics. Barriers and recommendations for improved clinical trial design were categorized into thematic groups.

resultsThe search yielded 7918 studies, with 131 meeting inclusion criteria. Barriers to trial participation were grouped into three overarching themes: (1) psychosocial barriers (e.g., fear of adverse events, distrust, and perceived limited personal benefit); (2) logistical barriers (e.g., travel requirements and financial burden); and (3) informational barriers (e.g., challenges understanding consent materials). Recommendations emphasized financial and logistical support for participants, appropriate information provision, and fostering trust between patients and trial staff.

conclusionAddressing informational, psychosocial, and logistical obstacles to participation is essential for timely evidence generation. Without meaningful strategies to engage patients and caregivers in clinical trial designs, evidence generation for novel oncology innovations will continue to lag, hampering patient access and appropriate reimbursement.

Indexed as

CaregiversClinical Trials as TopicNeoplasmsPatient ParticipationHumansPatient Selectionbarriersclinical trialsinformed consentoncologyparticipant preferencesprecision medicinetrial design

Identifiers

PMID42870373
PMCPMC13662225

What OpenQuestion holds

Textmetadata
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.