Cited by 58Ethics in Clinical ResearchPatient-Provider Communication in HealthcareEthics and bioethics in healthcare

Patients’ reasoning regarding the decision to participate in clinical cancer trials: an interview study

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Dellson, Pia, Nilsson, Kerstin, Jernström, Helena, Carlsson, Christina·2018·Trials

Abstract

BACKGROUND: Clinical cancer trials are crucial for the implementation of new treatments in the clinical setting, but it is equally crucial that patients are given the opportunity to make a well-informed decision about participation. The inclusion process is complex, including both oral and written information about the trial. The process of patients' decision-making regarding clinical cancer trials has not yet been sufficiently studied. This interview study aims to explore the process of patients' reasoning regarding the decision to participate in a clinical cancer trial. METHODS: The study is based on 27 individual face-to-face interviews with patients who had decided to participate in a clinical cancer trial. The interviews were audio-recorded and transcribed verbatim and then analysed using inductive content analysis. RESULTS: Content analysis revealed 17 subthemes grouped into five themes: (1) an unhesitating decision to participate; (2) a decision based on flimsy grounds and guided by emotion; (3) feeling safe and secure with my decision; (4) faced with a choice versus what choice do I have? and (5) hoping for help while helping others. The decision to participate in a clinical cancer trial was often immediate and guided by emotions, based on a trusting relationship with healthcare personnel rather than on careful reading of written information. Palliative patients, in particular, sometimes had unrealistic beliefs about the effectiveness of the trial treatment. CONCLUSIONS: It is vital that the decision to participate in a clinical cancer trial is preceded by an honest dialogue about possible positive and negative effects of the trial treatments, including other options such as supportive care in the palliative setting. Our findings also raise the questions of how important written information is for the decision-making process and also whether genuine informed consent is possible. To reach a higher degree of informed consent, it is most important that the oral information is given in a thorough and unbiased manner.

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Authors
Dellson, P., Nilsson, K., Jernström, H., & Carlsson, C.
Affiliations
  • Lund University (SE)
  • University of Gothenburg (SE)
Corresponding author
Dellson, Pia
Venue
Trials
Published
2018-09-29
Volume
19
Issue
1
Pages
528-528
ISSN
1745-6215 (ISSN-L)
OpenAlex
W2892749650
Cited by
58
References
42
Citations by year
2026: 4 · 2025: 9 · 2024: 5 · 2023: 6 · 2022: 15 · 2021: 7 · 2020: 8 · 2019: 3 · 2017: 1
FWCI
4.28
Type
journal article
Language
en
Open access
Locations
  • Trials (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, other-oa)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
  • Lund University Publications (Lund University) (submittedVersion)
Funders
  • Region Skane Research Fund
  • Region Skane ALF
  • Gunnar Nilssons Cancerstiftelse
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
Keywords
patient decision-making, informed consent, clinical trial participation, emotional decision-making, palliative care, supportive care
MeSH terms
Adult, Aged, Altruism, Choice Behavior, Clinical Trials as Topic, Emotions, Female, Humans, Informed Consent, Interviews as Topic, Health Knowledge, Attitudes, Practice, Male, Middle Aged, Neoplasms, Patient Education as Topic, Patient Selection, Trust, Research Subjects, Qualitative Research

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