Hope and meaning-making in phase-one oncology trials: A systematic review and thematic synthesis of qualitative evidence on patient-participant experiences

Escritt, Kate, Mann, Mala, Nelson, Annmarie ORCID: https://orcid.org/0000-0002-6075-8425 and Harrop, Emily ORCID: https://orcid.org/0000-0003-2820-0023 2022. Hope and meaning-making in phase-one oncology trials: A systematic review and thematic synthesis of qualitative evidence on patient-participant experiences. Trials 23 , 409. 10.1186/s13063-022-06306-9

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Abstract

Background Phase 1 drug trials are popular treatment options for patients with advanced disease, despite the greater levels of uncertainty associated with them. However, their meaning and consequences for patient-participants remains under-explored. This review synthesises the qualitative evidence of patients’ experiences of participating in phase 1 oncology trials, exploring their decisions to take part and the impacts of these trials on patient wellbeing. Methods A comprehensive literature search involving medical subject headings (MeSH) and keywords was undertaken in the following databases: MEDLINE, EMBASE, PsycINFO, Scopus, CINAHL, and Cochrane CENTRAL, with supplementary searches also conducted. Studies were independently screened for inclusion by two researchers. Included studies were critically appraised and data extracted using standardised forms. Qualitative results were analysed using thematic synthesis. Results Three main themes were identified across 13 studies: decision-making and joining the trial; experiences of taking part in the trial and hope and coping. Patients primarily joined trials hoping for therapeutic benefits, sentiments which prevailed and shaped their experiences across their trial journey. Rather than indicate therapeutic misconception based on poor understanding, patient perspectives more commonly pointed to differences between hope and expectation and cultural narratives of staying positive, trying everything and trusting in experts. Conclusions These findings challenge information-based models of consent, favouring coping frameworks which account for the role of hope and meaning-making during serious illness. Personalised consideration of existential and quality-of-life matters before and during trials is recommended, including palliative and supportive care alternatives to active treatment

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Additional Information:	This article is licensed under a Creative Commons Attribution 4.0 International License
Publisher:	BioMed Central
ISSN:	1745-6215
Date of First Compliant Deposit:	19 May 2022
Date of Acceptance:	13 April 2022
Last Modified:	12 Jan 2024 15:09
URI:	https://orca.cardiff.ac.uk/id/eprint/149871

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