Participation in clinical trials as viewed by the patient: understanding cultural and emotional aspects which influence choice

Oncology. 2008;74(3-4):177-87. doi: 10.1159/000151365. Epub 2008 Aug 20.

Abstract

Background: Patients invited to take part in a clinical trial may evoke an archetype on which they may base their decision of adherence to participation, instead of on the study itself.

Methods: A 17-item, multiple choice questionnaire was developed, tested and then administered to 102 Italian-speaking patients with advanced lung or breast cancers who had never been exposed to participation in a trial.

Results: The questionnaire was answered by all patients. Eighty-five percent were positive about trial participation. Demographic factors did not influence patients' willingness to participate. Trust in the investigator (76%) or in the institute (64%) and hope of receiving a new chance for cure (78%) were cited as reasons to accept participation. A minority was concerned by potential conflicts of interest (31%) or the thought of being 'guinea pigs' (36%), and feared that doctors were interested in advancing their own research, even though there were more efficient drugs available (28%). Fifty percent feared receiving a little-known medicine, and 76% considered that a thorough explanation of toxicity/safety of the proposed treatment helped them decide.

Conclusion: Several prejudices, fears and some hopes have been captured by the questionnaire. Understanding such specifics will improve patient information leading patients to a more conscious motivation in deciding whether to participate in a clinical trial.

MeSH terms

  • Adult
  • Aged
  • Attitude of Health Personnel
  • Breast Neoplasms / psychology*
  • Breast Neoplasms / therapy
  • Choice Behavior
  • Clinical Trials as Topic / methods
  • Conflict of Interest
  • Culture*
  • Emotions*
  • Female
  • Humans
  • Lung Neoplasms / psychology*
  • Lung Neoplasms / therapy
  • Male
  • Middle Aged
  • Motivation
  • Patient Participation / psychology*
  • Surveys and Questionnaires