title: Adult patient perspectives on clinical trial result reporting: A survey of cancer patients.
abstract: The provision of study results to research participants is supported by pediatric and adult literature. This study assessed adult cancer patient preferences surrounding aggregate result disclosure to study participants.
  
  
  
  A 46-item questionnaire was given to 250 adult cancer patients who had participated in oncology trials at a single center. Respondents answered questions surrounding their preferences for timing, content, and modality of communication for dissemination of study results.
  
  
  
  Questionnaire completion rate was 76% (189/250). Most patients (92%) strongly felt a right to know study results. Patients preferred result dissemination via letter for trials with positive outcomes, but preferred in-person clinic visits for negative outcomes. Despite this, a majority of participants (59%) found letters acceptable to inform participants of negative results. Only a minority (36%) of the participants found Internet-based disclosure acceptable for negative trial results. Unfortunately, very few patients (8%) recalled having received the results for a study they participated in, and of these patients, less than half fully understood the results they were given.
  
  
  
  Most clinical trial participants feel they have a right to study result disclosure, regardless of trial outcome. In-person visits are preferred for negative results, but more feasible alternatives such as letters were still acceptable for the majority of participants. However, Internet-based disclosure was not acceptable to most participants in oncology trials. Time and cost allocations for result disclosure should be considered during grant and ethics board applications, and clear guidelines are required to help researchers share the results with patients.
authors: Department of Surgery, University of Alberta, Edmonton, AB, Canada.
authors: Kate E
authors: KE
authors: Elzinga
authors: Department of Internal Medicine, University of Calgary, Calgary, AB, Canada.
authors: Omar F
authors: OF
authors: Khan
authors: Department of Internal Medicine, University of Calgary, Calgary, AB, Canada.
authors: Andrew R
authors: AR
authors: Tang
authors: Department of Pediatrics, Dalhousie University, Halifax, NS, Canada.
authors: Conrad V
authors: CV
authors: Fernandez
authors: Department of Oncology, University of Calgary, Calgary, AB, Canada.
authors: Christine L
authors: CL
authors: Elzinga
authors: Department of Oncology, University of Calgary, Calgary, AB, Canada.
authors: Daniel Yc
authors: DY
authors: Heng
authors: Division of Medical Oncology, University of Ottawa, Ottawa, ON, Canada.
authors: Michael M
authors: MM
authors: Vickers
authors: Department of Oncology, University of Calgary, Calgary, AB, Canada.
authors: Tony H
authors: TH
authors: Truong
authors: Department of Oncology, University of Calgary, Calgary, AB, Canada Patricia.Tang@albertahealthservices.ca.
authors: Patricia A
authors: PA
authors: Tang
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D002986:Clinical Trials as Topic; D003142:Communication; D030881:Disclosure; D005260:Female; D006801:Humans; D033181:Information Dissemination; D020407:Internet; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D011369:Professional-Patient Relations; D012108:Research Personnel; D035842:Research Subjects; D011795:Surveys and Questionnaires
keywords: Disclosure; attitude to health; ethics; patient rights/ethics; patient satisfaction; research; research subjects/psychology; researcher–subject relations