What matters in clinical trial decision-making

a systematic review of interviews exploring cancer patients’ experiences

Publikation: Bidrag til tidsskriftReviewForskningpeer review

Resumé

Background: Being diagnosed with cancer is an existential challenge and involves difficult treatment decisions, including treatment in clinical trials. Therapy for advanced cancer is potentially life-prolonging and only rarely cures advanced cancer, which often renders these patients in a special situation where dealing with end of life, hope and meaning, become an important part of life. Many existing reviews include both patients with advanced cancer and patients undergoing adjuvant cancer treatment, and there is a lack of reviews with consistent study designs and methods. Aim: To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision-making process. Method: A qualitative systematic literature review was conducted based on methods for thematic synthesis by Thomas and Hardens. Results: Eleven full-text articles were included in this study. Six descriptive themes appeared and were grouped under two analytical themes: Individualised decisions and Hope and existential matters, which, through discussion, developed into the synthesis of What matters in treatment-related decisions close to the end of life? This review has shown that existential matters are important in the decision-making and that addressing these might be of great importance in medical decision-making, whether it concerns the existential matters of the patients, of their relatives or of the health care professionals. Conclusion: This review points to existential issues as important contributors in making decisions about treatment. It can be beneficial if health care professionals address the role of existential matters in patients’ decision-making in terms of clinical trial participation and involve the relatives more directly to increase individualised decisions. Future research should include the health care professionals’ experiences when going in depth with decision-making, with a focus on the existential matters and uncertainties of the health care professionals.

OriginalsprogEngelsk
TidsskriftScandinavian Journal of Caring Sciences
Vol/bind33
Udgave nummer2
Sider (fra-til)266-278
ISSN0283-9318
DOI
StatusUdgivet - jun. 2019

Fingeraftryk

Clinical Trials
Interviews
Delivery of Health Care
Neoplasms
Professional Role
Medical Oncology
Uncertainty
Clinical Decision-Making

Citer dette

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title = "What matters in clinical trial decision-making: a systematic review of interviews exploring cancer patients’ experiences",
abstract = "Background: Being diagnosed with cancer is an existential challenge and involves difficult treatment decisions, including treatment in clinical trials. Therapy for advanced cancer is potentially life-prolonging and only rarely cures advanced cancer, which often renders these patients in a special situation where dealing with end of life, hope and meaning, become an important part of life. Many existing reviews include both patients with advanced cancer and patients undergoing adjuvant cancer treatment, and there is a lack of reviews with consistent study designs and methods. Aim: To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision-making process. Method: A qualitative systematic literature review was conducted based on methods for thematic synthesis by Thomas and Hardens. Results: Eleven full-text articles were included in this study. Six descriptive themes appeared and were grouped under two analytical themes: Individualised decisions and Hope and existential matters, which, through discussion, developed into the synthesis of What matters in treatment-related decisions close to the end of life? This review has shown that existential matters are important in the decision-making and that addressing these might be of great importance in medical decision-making, whether it concerns the existential matters of the patients, of their relatives or of the health care professionals. Conclusion: This review points to existential issues as important contributors in making decisions about treatment. It can be beneficial if health care professionals address the role of existential matters in patients’ decision-making in terms of clinical trial participation and involve the relatives more directly to increase individualised decisions. Future research should include the health care professionals’ experiences when going in depth with decision-making, with a focus on the existential matters and uncertainties of the health care professionals.",
keywords = "advanced cancer, communication, decision-making, existential issues, literature review, patient communication, qualitative studies, treatment, whole person care",
author = "Gregersen, {Trine A.} and Regner Birkelund and Maiken Wolderslund and Netsey-Afedo, {Mette L{\o}we} and Steffensen, {Karina Dahl} and Jette Ammentorp",
year = "2019",
month = "6",
doi = "10.1111/scs.12637",
language = "English",
volume = "33",
pages = "266--278",
journal = "Scandinavian Journal of Caring Sciences",
issn = "0283-9318",
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}

TY - JOUR

T1 - What matters in clinical trial decision-making

T2 - a systematic review of interviews exploring cancer patients’ experiences

AU - Gregersen, Trine A.

AU - Birkelund, Regner

AU - Wolderslund, Maiken

AU - Netsey-Afedo, Mette Løwe

AU - Steffensen, Karina Dahl

AU - Ammentorp, Jette

PY - 2019/6

Y1 - 2019/6

N2 - Background: Being diagnosed with cancer is an existential challenge and involves difficult treatment decisions, including treatment in clinical trials. Therapy for advanced cancer is potentially life-prolonging and only rarely cures advanced cancer, which often renders these patients in a special situation where dealing with end of life, hope and meaning, become an important part of life. Many existing reviews include both patients with advanced cancer and patients undergoing adjuvant cancer treatment, and there is a lack of reviews with consistent study designs and methods. Aim: To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision-making process. Method: A qualitative systematic literature review was conducted based on methods for thematic synthesis by Thomas and Hardens. Results: Eleven full-text articles were included in this study. Six descriptive themes appeared and were grouped under two analytical themes: Individualised decisions and Hope and existential matters, which, through discussion, developed into the synthesis of What matters in treatment-related decisions close to the end of life? This review has shown that existential matters are important in the decision-making and that addressing these might be of great importance in medical decision-making, whether it concerns the existential matters of the patients, of their relatives or of the health care professionals. Conclusion: This review points to existential issues as important contributors in making decisions about treatment. It can be beneficial if health care professionals address the role of existential matters in patients’ decision-making in terms of clinical trial participation and involve the relatives more directly to increase individualised decisions. Future research should include the health care professionals’ experiences when going in depth with decision-making, with a focus on the existential matters and uncertainties of the health care professionals.

AB - Background: Being diagnosed with cancer is an existential challenge and involves difficult treatment decisions, including treatment in clinical trials. Therapy for advanced cancer is potentially life-prolonging and only rarely cures advanced cancer, which often renders these patients in a special situation where dealing with end of life, hope and meaning, become an important part of life. Many existing reviews include both patients with advanced cancer and patients undergoing adjuvant cancer treatment, and there is a lack of reviews with consistent study designs and methods. Aim: To systematically review and thematically synthesise the experiences of patients and relatives when they have to decide whether or not to participate in a clinical oncology trial and to provide knowledge about the decision-making process. Method: A qualitative systematic literature review was conducted based on methods for thematic synthesis by Thomas and Hardens. Results: Eleven full-text articles were included in this study. Six descriptive themes appeared and were grouped under two analytical themes: Individualised decisions and Hope and existential matters, which, through discussion, developed into the synthesis of What matters in treatment-related decisions close to the end of life? This review has shown that existential matters are important in the decision-making and that addressing these might be of great importance in medical decision-making, whether it concerns the existential matters of the patients, of their relatives or of the health care professionals. Conclusion: This review points to existential issues as important contributors in making decisions about treatment. It can be beneficial if health care professionals address the role of existential matters in patients’ decision-making in terms of clinical trial participation and involve the relatives more directly to increase individualised decisions. Future research should include the health care professionals’ experiences when going in depth with decision-making, with a focus on the existential matters and uncertainties of the health care professionals.

KW - advanced cancer

KW - communication

KW - decision-making

KW - existential issues

KW - literature review

KW - patient communication

KW - qualitative studies

KW - treatment

KW - whole person care

U2 - 10.1111/scs.12637

DO - 10.1111/scs.12637

M3 - Review

VL - 33

SP - 266

EP - 278

JO - Scandinavian Journal of Caring Sciences

JF - Scandinavian Journal of Caring Sciences

SN - 0283-9318

IS - 2

ER -