Patients' understanding of clinical research: An Italian cancer patient survey

Tumori. 2019 Feb;105(1):31-37. doi: 10.1177/0300891618811281. Epub 2018 Nov 26.

Abstract

Introduction:: Patients' awareness of clinical research and their involvement in clinical trials is of great importance, but it is difficult to estimate the extent of knowledge on the research being undertaken.

Methods:: We evaluated the level of knowledge about clinical research using a self-reporting survey distributed to 967 adult patients with cancer attending the Departments of Medical Oncology and Onco-Haematology Units of IRST IRCCS and 4 hospitals in the region of Emilia-Romagna, Italy. The questionnaire was composed of 10 specific items on research knowledge. Patients responding correctly to at least 8 of the 10 items were considered to have a good understanding of clinical research.

Results:: The questionnaire was completed by 769 patients (response rate 79.5%). Only 19% of patients were found to have a good understanding of clinical research. Patients with higher education and those who had previous clinical trial experience showed a significantly better understanding. Fifty-three percent of patients said that they would be willing to participate in a trial studying a new drug and 75% expressed an interest in taking part in informative meetings/events about clinical studies.

Conclusions:: Our results show that patients' understanding of clinical research is limited and highlight an interest in learning more.

Keywords: Cancer; Clinical trial; Patient knowledge; Questionnaire.

MeSH terms

  • Awareness
  • Clinical Trials as Topic
  • Hospitals / statistics & numerical data
  • Humans
  • Italy
  • Medical Oncology / statistics & numerical data
  • Neoplasms / psychology*
  • Surveys and Questionnaires