Evidence map›Paper›PMID 40608993›Full record

ArticleAJOB empirical bioethics

Patients' Views on Paying to Participate in Clinical Trials.

Nyiramugisha Niyibizi, Tekiah McClary, Margie Dixon, April Liao, Candace D Speight, Ayannah Lang, Neal W Dickert, Rebecca D Pentz

Abstract read
In one paragraph

Article in AJOB empirical bioethics. 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.

Nyiramugisha NiyibiziGeorgia Clinical and Translational Science Alliance at Emory University School of Medicine, Atlanta, GA, USA.
Tekiah McClaryDepartment of Hematology/Oncology, Winship Cancer Institute of Emory School of Medicine, Atlanta, GA, USA.
Margie DixonDepartment of Hematology/Oncology, Winship Cancer Institute of Emory School of Medicine, Atlanta, GA, USA.
April LiaoDivision of Cardiology, Department of Medicine, Emory University School of Medicine, Atlanta, GA, USA.
Candace D SpeightGeorgia Clinical and Translational Science Alliance at Emory University School of Medicine, Atlanta, GA, USA.
Ayannah LangDepartment of Hematology/Oncology, Winship Cancer Institute of Emory School of Medicine, Atlanta, GA, USA.
Neal W DickertGeorgia Clinical and Translational Science Alliance at Emory University School of Medicine, Atlanta, GA, USA.
Rebecca D PentzDepartment of Hematology/Oncology, Winship Cancer Institute of Emory School of Medicine, Atlanta, GA, USA.

Funding

Implementing a Maternal health and PRegnancy Outcomes Vision for Everyone (IMPROVE)UL1TR002378 · NCATS · EMORY UNIVERSITY · PI Andres J Garcia, Elizabeth O. Ofili · 2017 to 2026
$92.1M
NCATS NIH HHS UL1 TR002378
6 · The paper itself

Abstract

backgroundClinical trials of medical therapies are critical for the advancement of care and are expensive. Sometimes, the costs of study drugs are not covered by insurance or the sponsor, and trial participants bear the costs. Participant costs in trials have been ethically controversial; review boards must decide whether to approve these trials and how to address costs. Because little is known about how participants view these costs, we evaluated patients' perspectives about being asked to pay for drugs in a clinical trial.

methodsWe interviewed 33 patients recruited from oncology and cardiology clinics. Interviews included two hypothetical scenarios of trials involving costs: (1) a randomized trial of two current medications with moderate but different out-of-pocket costs; and (2) a trial involving a more expensive investigational drug. Patients were asked to share reactions, concerns, preferences about being approached, and what should happen if removed from the trial due to safety concerns.

resultsPatients expressed a variety of concerns and expectations associated with being asked to bear trial costs, as well as suggestions to reduce costs to research participants. Concerns included the study drug expense, fairness of asking research participants to bear study costs, and that disadvantaged individuals could be excluded. Despite sharing these concerns, patients prioritized autonomy in allowing patients to decide whether to participate, felt that "pay-to-participate" trials should be allowed to occur, and thought potential benefits from trial interventions, along with personal financial situation, would drive participation decisions.

conclusionsDespite mixed reactions about being asked to pay for study drugs, the majority of patients felt that people should not be prevented from having the option to participate and thus that these trials should not be prohibited. Continued understanding of patient views of research participation and the costs involved can guide how review boards and researchers address these trials.

Indexed as

Clinical Trials as TopicPatient ParticipationPatient SelectionRandomized Controlled Trials as TopicResearch SubjectsAdultAgedDecision MakingDrug CostsDrugs, InvestigationalFemaleHumansMaleMiddle AgedPersonal AutonomyDrugs, Investigationalclinical trialclinical trial recruitmentcost-sharingPay-to-participate

Identifiers

PMID40608993
PMCPMC12233191

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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.