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"I Have a Lot of Pills in My Bag, You Know": Institutional Norms in the Provision of Hope in Phase I Clinical Cancer Trials.
Uppsala universitet.ORCID iD: 0000-0001-6011-6740
Uppsala universitet.
2017 (English)In: Journal of oncology practice, ISSN 1935-469X, Vol. 13, no 10, p. 679-682Article in journal, Editorial material (Refereed) Published
Place, publisher, year, edition, pages
2017. Vol. 13, no 10, p. 679-682
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-6989DOI: 10.1200/JOP.2017.021832PubMedID: 28837376OAI: oai:DiVA.org:esh-6989DiVA, id: diva2:1257985
Note

I avhandlingen Patients in Clinical Cancer TrialsUnderstanding, Motivation and Hope:

Godskesen, T., Hansson, M.G. & Kihlbom, U. (2014). ‘I have a lot of pills in my bag, you know”. Institutional norms in the provision of hope in phase 1 clinical cancer trials. (In manuscript).

Available from: 2018-10-23 Created: 2018-10-23 Last updated: 2019-01-07Bibliographically approved
In thesis
1. Patients in Clinical Cancer Trials: Understanding, Motivation and Hope
Open this publication in new window or tab >>Patients in Clinical Cancer Trials: Understanding, Motivation and Hope
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis was to study participants' understanding of clinical cancer trials,and their motivation for participation. Of particular interest was the question of whether thepatients hoped for a cure resulting from the trial. The thesis was based on four studies andused three methods: interviews, a questionnaire, and empirical bioethics. The results of Study Iindicated that the participants in phase 1 trials understood most of the information provided, butwere unaware of both the very small potential for treatment benefit, and the risk of harm. Patientsin phase 3 trials had a good understanding of the trial, except regarding side effects and their rightto withdraw. Some found it hard to ask questions and felt they needed more information (StudyIII). The participants in phase 1 trials were strongly motivated by the generally unrealistic hopefor therapeutic benefit (Study I). When the chances of a cure are minuscule, as for participantswith end-stage cancer in phase 1 trials, hope can play an important, positive role and offermeaning to one’s remaining life. However, hope for an unrealistic outcome could also deprivepatients of an opportunity to spend their remaining lives, as they would otherwise choose(Study II). The participants in phase 3 trials indicated that their motivation for participationwas multifaceted; the most common motivations included hope of therapeutic benefit, altruism,access to extra clinical examinations or better care, and a wish to repay society for the helpthey had received (Study III). After stratifying and analysing the motivation data by gender,age, education and previous experience of trial participation, males and those aged ≥65 yearswere significantly more motivated to participate out of a desire to reciprocate the help theyhad received, either because of a sense of duty or because their families or friends consideredthat they should attend (Study IV). In conclusion, the informed consent process seems to workrelatively well, with good results within most subgroups. However, patients with end-stagecancer who are participating in phase 1 trials are a vulnerable group as they have very littlepotential for treatment benefit coupled with a tangible risk of harm.

Place, publisher, year, edition, pages
Uppsala: Uppsala universitet, 2015. p. 79
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1112
Keywords
Cancer, Adults, Clinical trials, Phase 1 trials, Phase 3 trials, Patient information, Patient education, Informed consent, Hope
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7090 (URN)978-91-554-9268-7 (ISBN)
Public defence
2015-08-28, BMC, A1:107a, Husargatan 3, Uppsala, 09:15 (Swedish)
Opponent
Supervisors
Available from: 2018-11-08 Created: 2018-11-08 Last updated: 2018-11-08Bibliographically approved

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