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Cited by 55Ethics in Clinical ResearchEthics and bioethics in healthcarePatient-Provider Communication in Healthcare

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Satisfaction with the decision to participate in cancer clinical trials is high, but understanding is a problem

Jefford, M., Mileshkin, L., Matthews, J., Raunow, H., O’Kane, C., Cavicchiolo, T., Brasier, H., Anderson, M., Reynolds, J.·2011·Supportive Care in Cancer
DOI 10.1007/s00520-010-0829-6
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Abstract

Background Partially presented in poster format at the 40th and 41st Annual Meetings of the American Society of Clinical Oncology, held in 2004 in New Orleans, Louisiana and in 2005 in Orlando, Florida. Purpose We aimed to: (a) assess patient knowledge about cancer clinical trials (CCT) and satisfaction with their decision to participate, (b) determine whether satisfaction correlates with objective understanding, or other factors, and (c) identify correlates of increased understanding. Methods A convenience sample of 100 patients were recruited. Instruments assessed quality of informed consent (QuIC), quality of life (EORTC QLQ C-30), anxiety and depression (HADS), and preferences for information and involvement in decision making. Measures were completed within 2 weeks of clinical trial enrollment. Results One hundred two patients (68 male) with a median age of 58.4 years (29-85) were registered in 27 of the 33 therapeutic cancer clinical trials approved for the Consent Study. Mean QuIC objective knowledge (QuIC-A) was 77.6 (/100) (95% CI, 75.7-79.4) and perceived (subjective) understanding (QuIC-B) 91.5 (95% CI, 89.6-93.3). There was low but significant correlation between QuIC-A and B (R = 0.26, p = 0.008). Satisfaction was very high. Correlation between QuIC-B and satisfaction was moderate (0.430, p Conclusions Patient knowledge regarding CCT is similar to published US data, and satisfaction is high. Satisfaction correlates with perceived but not objective understanding o…

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  • Many participants, including biobank participants, do not understand the information disclosed to them.

    “and, not surprisingly, many participants do not understand the information disclosed (4–6,70,71, 83, 87, 97), including biobank participants (93,104,114).”

    From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [70]

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Metadata

Authors
Jefford, M., Mileshkin, L., Matthews, J., Raunow, H., O’Kane, C., Cavicchiolo, T., Brasier, H., Anderson, M., & Reynolds, J.
Affiliations
  • The University of Melbourne (AU)
  • Cancer Trials Australia (AU)
Corresponding author
Jefford, M.
ORCID
Venue
Supportive Care in Cancer
Publisher
Springer Science and Business Media LLC
Published
2010-02-23
Volume
19
Issue
3
Pages
371-379
ISSN
  • 0941-4355 (ISSN-L)
  • 1433-7339
DOI
10.1007/s00520-010-0829-6
OpenAlex
W2077420747
Cited by
55
References
0
Citations by year
2026: 1 · 2025: 3 · 2024: 2 · 2023: 2 · 2022: 2 · 2021: 4 · 2020: 2 · 2019: 5 · 2018: 8 · 2017: 5 · 2016: 3 · 2015: 4 · 2014: 5 · 2013: 1 · 2012: 5
FWCI
2.87
Type
journal article
Language
en
Open access
closed
Licence
www.springer.com/tdm (tdm)
Locations
  • Supportive Care in Cancer (publishedVersion)
  • PubMed (publishedVersion)
Funders
Cancer Australia
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
  • Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
Keywords
cancer clinical trials, informed consent, patient satisfaction, patient knowledge, perceived understanding, quality of life, anxiety and depression, patient preferences, shared decision-making, clinical trial participation
MeSH terms
Adult, Aged, Aged, 80 and over, Clinical Trials as Topic, Decision Making, Female, Humans, Informed Consent, Health Knowledge, Attitudes, Practice, Male, Middle Aged, Neoplasms, Patient Participation, Quality of Life, Patient Satisfaction, Patient Selection, Research Subjects

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