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BMC Cancer
Published in: BMC Cancer 1/2024

Open Access 01-12-2024 | Cancer Immunotherapy | Research

Decision-making and autonomy among participants in early-phase cancer immunotherapy trials: a qualitative study

Authors: Jonathan Avery, Jennifer A.H. Bell, Khotira Baryolay, Gary Rodin, Rinat Nissim, Lynda G. Balneaves

Published in: BMC Cancer | Issue 1/2024

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Abstract

Background

Participants considering early-phase cancer clinical trials (CTs) need to understand the unique risks and benefits prior to providing informed consent. This qualitative study explored the factors that influence patients’ decisions about participating in early-phase cancer immunotherapy CTs through the ethical lens of relational autonomy.

Methods

Using an interpretive descriptive design, interviews were conducted with 21 adult patients with advanced cancer who had enrolled in an early-phase CT. Data was analyzed using relational autonomy ethical theory and constant comparative analysis.

Results

The extent to which participants perceived themselves as having a choice to participate in early-phase cancer immunotherapy CTs was a central construct. Perceptions of choice varied according to whether participants characterized their experience as an act of desperation or as an opportunity to receive a novel treatment. Intersecting psychosocial and structural factors influenced participants’ decision making about participating in early-phase cancer immunotherapy trials. These relational factors included: (1) being provided with hope; (2) having trust; (3) having the ability to withdraw; and (4) timing constraints.

Conclusions

Findings highlight the continuum of perceived choice that exists among patients with cancer when considering participation in early-phase cancer immunotherapy CTs. All participants were interpreted as exhibiting some degree of relational autonomy within the psychosocial and structural context of early-phase CT decision making. This study offers insights into the intersection of cancer care delivery, personal beliefs and values, and established CT processes and structures that can inform future practices and policies associated with early-phase cancer immunotherapy CTs to better support patients in making informed decisions.
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Metadata
Title
Decision-making and autonomy among participants in early-phase cancer immunotherapy trials: a qualitative study
Authors
Jonathan Avery
Jennifer A.H. Bell
Khotira Baryolay
Gary Rodin
Rinat Nissim
Lynda G. Balneaves
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Cancer / Issue 1/2024
Electronic ISSN: 1471-2407
DOI
https://doi.org/10.1186/s12885-024-12119-7

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