Evidence map›Paper›PMID 38919873›Full record

ArticleCancer management and research2024

Patient, Relative and Staff Experiences of Clinical Trial Participation in Neurooncology: "Maybe You Can Also Show the Positive, No Matter How It Ends".

Ronja Thallner, Christoph Gumbinger, Anja Hohmann, Antje Wick, Wolfgang Wick, Loraine Busetto

Abstract read
In one paragraph

Article in Cancer management and research, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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.

Ronja ThallnerDepartment of Neurology, Heidelberg University Hospital, Heidelberg, Germany.ORCID 0009-0009-9905-5792
Christoph GumbingerDepartment of Neurology, Heidelberg University Hospital, Heidelberg, Germany.
Anja HohmannDepartment of Neurology, Heidelberg University Hospital, Heidelberg, Germany.
Antje WickDepartment of Neurology, Heidelberg University Hospital, Heidelberg, Germany.
Wolfgang WickDepartment of Neurology, Heidelberg University Hospital, Heidelberg, Germany.
Loraine BusettoDepartment of Neurology, Heidelberg University Hospital, Heidelberg, Germany.ORCID 0000-0002-9228-7875

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Purpose: There is a lack of evidence regarding how patients with malignant brain tumor and their relatives experience participation in neurooncological clinical trials. Similarly, insights from the perspective of trial staff caring for this group of patients are missing. This study aims to investigate patient, relative and trial staff experiences regarding participation in clinical neurooncological trials. Methods: Within a qualitative exploratory study, 29 semi-structured interviews with brain tumor patients, relatives and trial staff were conducted and analyzed using reflexive thematic analysis (RTA) by Braun and Clarke. A patient researcher and patient council were involved in data analysis and interpretation. Results: Four themes were developed reflecting significant aspects of the trial experience: 1. "It all revolves around hope"; 2. "Trial participation: experiencing unique medical care"; 3. "Everyone's roles are changing"; 4. "Communication as a possible area of conflict". Experiencing trial participation and general medical treatment were found to be interconnected to such a degree that they were often not meaningfully distinguished by patients and relatives. Conclusion: In addition to assessing traditional endpoints for patient outcomes, we recommend increased emphasis on investigating the impact of the "soft" components constituting trial participation. Due to the interconnectedness of medical treatment and trial participation, we recommend further investigation in comparison to experiences in regular care. A deeper understanding of trial participation is needed to inform improvements for patient experiences and staff satisfaction alongside medical and scientific progress.

Indexed as

brain tumorcancer researchcare experiencesqualitative research

Identifiers

PMID38919873
PMCPMC11197948

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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.