Evidence map›Paper›PMID 33126874›Full record

ArticleBMC palliative care2020

Nothing to lose: a grounded theory study of patients' and healthcare professionals' perspectives of being involved in the consent process for oncology trials with non-curative intent.

Mary Murphy, Eilís McCaughan, Matthew A Carson, Monica Donovan, Richard H Wilson, Donna Fitzsimons

Abstract read
In one paragraph

Article in BMC palliative care, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing 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

7 citing papers in PubMed.

  1. Trial
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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

6 authors.

Mary MurphyResuscitation Services, Elliott Dynes Building, Royal Victoria Hospital, Belfast Health and Social Care Trust, Belfast, UK.
Eilís McCaughanSchool of Nursing and Midwifery, Institute of Nursing and Health Research, Ulster University, Coleraine, UK.
Matthew A CarsonSchool of Nursing and Midwifery, Medical Biology Centre, Queen's University Belfast, Belfast, UK.
Monica DonovanSchool of Nursing and Midwifery, Medical Biology Centre, Queen's University Belfast, Belfast, UK.
Richard H WilsonInstitute of Cancer Sciences, University of Glasgow, Glasgow, UK.
Donna FitzsimonsSchool of Nursing and Midwifery, Medical Biology Centre, Queen's University Belfast, Belfast, UK. d.fitzsimons@qub.ac.uk.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundClinical cancer research trials may offer little or no direct clinical benefit to participants where a cure is no longer possible. As such, the decision-making and consent process for patient participation is often challenging.

aimTo gain understanding of how patients make decisions regarding clinical trial participation, from the perspective of both the patient and healthcare professionals involved.

methodsIn-depth, face to face interviews using a grounded theory approach. This study was conducted in a regional Cancer Centre in the United Kingdom. Of the 36 interviews, 16 were conducted with patients with cancer that had non-curative intent and 18 with healthcare professionals involved in the consent process.

results'Nothing to lose' was identified as the core category that underpinned all other data within the study. This highlighted the desperation articulated by participants, who asserted trial participation was the 'only hope in the room'. The decision regarding participation was taken within a 'trusting relationship' that was important to both patients and professionals. Both were united in their 'fight against cancer'. These two categories are critical in understanding the decision-making/consent process and are supported by other themes presented in the theoretical model.

conclusionThis study presents an important insight into the complex and ethically contentious situation of consent in clinical trials that have non-curative intent. It confirms that patients with limited options trust their doctor and frequently hold unrealistic hopes for personal benefit. It highlights a need for further research to develop a more robust and context appropriate consent process.

Indexed as

AdultDecision MakingFemaleGrounded TheoryHealth PersonnelHumansInformed ConsentInterviews as TopicMaleMedical OncologyMiddle AgedPatientsQualitative ResearchResearchUnited KingdomCancerClinical trialConsentDecision-makingGrounded theoryNeoplasms

Identifiers

PMID33126874
PMCPMC7602307

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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.