Interventions supporting cancer patients in making decisions regarding participation in clinical trials - a systematic review

Abstract Objectives Existing research on the perspectives of patients with cancer and health care professionals indicates that patient decision making on cancer clinical trial participation is a complex process and may be poorly understood, possibly compromising their decision to participate. This s...

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Main Authors: Line Hillersdal, Zandra Engelbak Nielsen, Ane Taudorf Nørmark, Ann Knoop, Karin Piil
Format: Article
Language:English
Published: BMC 2022-10-01
Series:BMC Cancer
Subjects:
Online Access:https://doi.org/10.1186/s12885-022-10066-9
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author Line Hillersdal
Zandra Engelbak Nielsen
Ane Taudorf Nørmark
Ann Knoop
Karin Piil
author_facet Line Hillersdal
Zandra Engelbak Nielsen
Ane Taudorf Nørmark
Ann Knoop
Karin Piil
author_sort Line Hillersdal
collection DOAJ
description Abstract Objectives Existing research on the perspectives of patients with cancer and health care professionals indicates that patient decision making on cancer clinical trial participation is a complex process and may be poorly understood, possibly compromising their decision to participate. This systematic review investigates interventions that support patients in their decision-making processes regarding whether to participate or not and assesses the qualities of the interventions, measures used and related outcomes. Methods Six databases were systematically searched and only studies evaluating interventions that support the decision making of adult patients offered to enter a cancer clinical trial were included. Ten articles met the criteria and were analysed using a narrative synthesis approach. Results The research focus of the included studies reflected the multifactorial nature of what constitutes support for patient decision making in terms of entering a cancer clinical trial. However, most interventions were based on the hypothesis that more information leads to support in decision making, and did not take other factors, such as the relationship to the clinical staff or relatives, the patients’ strong hope for therapeutic benefit or other existential needs into account. The interventions were primarily based on a specific tool, executed once, which seems to imply that decisions need only to be supported once and not at several time points throughout the decision process, and did not assess the importance of a patient’s family- or social relations. Moreover, few interventions focused on the patients’ counselling experience or assessed patient preferences in relation to decision making. Conclusions The findings demonstrate a lack of research on interventions to support patients’ decision making that takes other factors, apart from improving knowledge of trials, into account. Limited evidence exists on the effectiveness of decision support interventions to improve the experience of support in adult patients with cancer. Interventions that take patient preferences in relation to decision making and the social context of decision processes into account need to be developed and assessed.
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spelling doaj.art-29b8cf47256d493085bc12b92beaacea2022-12-22T03:53:48ZengBMCBMC Cancer1471-24072022-10-0122112010.1186/s12885-022-10066-9Interventions supporting cancer patients in making decisions regarding participation in clinical trials - a systematic reviewLine Hillersdal0Zandra Engelbak Nielsen1Ane Taudorf Nørmark2Ann Knoop3Karin Piil4Centre for Medical Science and Technology Studies, Department of Public Health, University of CopenhagenDepartment of Oncology, Centre for Cancer and Organ Diseases, Copenhagen University Hospital, RigshospitaletDepartment of Oncology, Centre for Cancer and Organ Diseases, Copenhagen University Hospital, RigshospitaletDepartment of Oncology, Centre for Cancer and Organ Diseases, Copenhagen University Hospital, RigshospitaletDepartment of Oncology, Centre for Cancer and Organ Diseases, Copenhagen University Hospital, RigshospitaletAbstract Objectives Existing research on the perspectives of patients with cancer and health care professionals indicates that patient decision making on cancer clinical trial participation is a complex process and may be poorly understood, possibly compromising their decision to participate. This systematic review investigates interventions that support patients in their decision-making processes regarding whether to participate or not and assesses the qualities of the interventions, measures used and related outcomes. Methods Six databases were systematically searched and only studies evaluating interventions that support the decision making of adult patients offered to enter a cancer clinical trial were included. Ten articles met the criteria and were analysed using a narrative synthesis approach. Results The research focus of the included studies reflected the multifactorial nature of what constitutes support for patient decision making in terms of entering a cancer clinical trial. However, most interventions were based on the hypothesis that more information leads to support in decision making, and did not take other factors, such as the relationship to the clinical staff or relatives, the patients’ strong hope for therapeutic benefit or other existential needs into account. The interventions were primarily based on a specific tool, executed once, which seems to imply that decisions need only to be supported once and not at several time points throughout the decision process, and did not assess the importance of a patient’s family- or social relations. Moreover, few interventions focused on the patients’ counselling experience or assessed patient preferences in relation to decision making. Conclusions The findings demonstrate a lack of research on interventions to support patients’ decision making that takes other factors, apart from improving knowledge of trials, into account. Limited evidence exists on the effectiveness of decision support interventions to improve the experience of support in adult patients with cancer. Interventions that take patient preferences in relation to decision making and the social context of decision processes into account need to be developed and assessed.https://doi.org/10.1186/s12885-022-10066-9CancerDecision supportNarrative synthesisOncologySystematic reviewTrial participation
spellingShingle Line Hillersdal
Zandra Engelbak Nielsen
Ane Taudorf Nørmark
Ann Knoop
Karin Piil
Interventions supporting cancer patients in making decisions regarding participation in clinical trials - a systematic review
BMC Cancer
Cancer
Decision support
Narrative synthesis
Oncology
Systematic review
Trial participation
title Interventions supporting cancer patients in making decisions regarding participation in clinical trials - a systematic review
title_full Interventions supporting cancer patients in making decisions regarding participation in clinical trials - a systematic review
title_fullStr Interventions supporting cancer patients in making decisions regarding participation in clinical trials - a systematic review
title_full_unstemmed Interventions supporting cancer patients in making decisions regarding participation in clinical trials - a systematic review
title_short Interventions supporting cancer patients in making decisions regarding participation in clinical trials - a systematic review
title_sort interventions supporting cancer patients in making decisions regarding participation in clinical trials a systematic review
topic Cancer
Decision support
Narrative synthesis
Oncology
Systematic review
Trial participation
url https://doi.org/10.1186/s12885-022-10066-9
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