title: Research information knowledge, perceived adequacy, and understanding in cancer clinical trial participants.
abstract: OBJECTIVE
  To describe the adequacy of research information among people with cancer at the time they accept or decline participation in a cancer clinical trial.
  
  
  METHODS
  Cross-sectional, descriptive.
  
  
  METHODS
  An urban, academic, National Cancer Institute-designated comprehensive cancer center.
  
  
  METHODS
  197 patients with advanced gastrointestinal cancer.
  
  
  METHODS
  Mailed survey; self-reported data.
  
  
  METHODS
  Adequacy of research information (actual knowledge, perceived adequacy of information, and perceived understanding), cancer clinical trial participation, and satisfaction with the decision to participate.
  
  
  RESULTS
  Most respondents (88%) perceived themselves as having adequate information to make an informed decision regarding cancer clinical trial participation. In addition, 35% demonstrated adequate knowledge of basic clinical research.
  
  
  CONCLUSIONS
  Patients decide to accept or decline cancer clinical trials without having adequate knowledge.
  
  
  CONCLUSIONS
  Nurses have an important role in educating patients regarding cancer clinical trials. The ideal teachable moment may not occur at the time of diagnosis; other less stressful opportunities may present when the patient is more receptive.
authors.affiliation: Skip Viragh Center for Pancreas Cancer Clinical Research and Patient Care, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins, Baltimore, MD, USA. biedrba@jhmi.edu
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Biedrzycki
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002986:Clinical Trials as Topic; D032882:Comprehension; D003430:Cross-Sectional Studies; D003657:Decision Making; D005260:Female; D005770:Gastrointestinal Neoplasms / Q000628:therapy*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D010358:Patient Participation / Q000523:psychology*; D017060:Patient Satisfaction