Quality of Life Research

, Volume 12, Issue 4, pp 395–404

Cancer patients' preferences for communicating clinical trial quality of life information: A qualitative study

Authors

  • M. Brundage
    • Cancer Care and EpidemiologyQueen's University
  • A. Leis
    • Department of Community Health and EpidemiologyUniversity of Saskatchewan
  • A. Bezjak
    • University of Toronto and the Princess Margaret Hospital
  • D. Feldman-Stewart
    • Cancer Care and EpidemiologyQueen's University
  • L. Degner
    • Faculty of NursingUniversity of Manitoba
  • K. Velji
    • University of Toronto and the Princess Margaret Hospital
  • L. Zetes-Zanatta
    • Cancer Care and EpidemiologyQueen's University
  • D. Tu
    • NCIC Clinical Trials Group and Queen's University
  • P. Ritvo
    • University of Toronto and the Princess Margaret Hospital
  • J. Pater
    • NCIC Clinical Trials Group and Queen's University
Article

DOI: 10.1023/A:1023404731041

Cite this article as:
Brundage, M., Leis, A., Bezjak, A. et al. Qual Life Res (2003) 12: 395. doi:10.1023/A:1023404731041

Abstract

Health-related quality of life (HRQL) is a prevalent outcome measure in clinical trials, but it is not known how best to communicate HRQL results to new patients with cancer. The purpose was to explore cancer patients' attitudes toward, and preferences for, 10 visual and written formats for communicating HRQL information. Using standardized qualitative methods, six focus groups were held (two groups in each of three cancer centres) with patients who had completed treatment for cancer at least 6 months earlier. Groups were stratified according to patients' education. To ensure consistency across centres, group moderators used the same detailed guide, training video, and props. Three investigators independently coded the resulting transcripts. Participants also rated each of the 10 presentation formats as to their perceived usefulness. Fourteen men and 19 women with a variety of cancer diagnoses participated; 13 (39%) participated in the three lower-education groups and 20 (61%) in the three higher-education groups. We found that simple formats (simple graphs or written text) were generally preferred to more complex graphical information, regardless of educational level. The same format was rated favourably by the highest proportion of participants in both the high (85%) and low (85%) education level groups. Individual patients, however, varied as to which visual format they most preferred. Patients did not wish to receive HRQL information out of context or without explanation. We conclude that cancer patients desire HRQL information, but vary in their preferences for its communication. Simple formats are generally preferred.

CancerControlled clinical trialsPatient educationQuality of life

Copyright information

© Kluwer Academic Publishers 2003