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Communicating Quality of Life Information to Cancer Patients: A Study of Six Presentation Formats

From the Radiation Oncology Research Unit, Queen's University, Kingston; University of Toronto; Princess Margaret Hospital, Toronto, Ontario; Department of Community Health & Epidemiology, University of Saskatchewan, Saskatoon, Saskatchewan; Faculty of Nursing, University of Manitoba, Winnipeg, Manitoba, Canada; and the National Cancer Institute of Canada Clinical Trials Group

Address reprint requests to M.D. Brundage, MD, Division of Cancer Control and Epidemiology, Queen's Cancer Research Institute, Queen's University, Kingston, Ontario, Canada, K7L 3N6; e-mail: michael.brundage{at}krcc.on.ca

PURPOSE: To determine which formats for presenting health-related quality of life (HRQL) data are interpreted most accurately and are most preferred by cancer patients. Patients often want a great deal of information about cancer treatments, including information relevant to HRQL. Clinical trials provide methodologically sound HRQL data that may be useful to patients.

PATIENTS AND METHODS: In a multicenter study, 198 patients with previously treated cancer participated in a structured interview. Participants judged HRQL information presented in one textual and five graphical formats. Outcome measures included the accuracy of patients' interpretations and ease-of-use and helpfulness ratings for each format.

RESULTS: Correct interpretations ranged from 85% to 98% across formats (F = 10.3, P < .0001) with line graphs of mean HRQL scores over time being interpreted correctly most often. Older patients and less-educated patients were less likely to interpret graphs accurately (F = 7.3, P = .008; and F = 10.6, P = .001, respectively), but all groups were most accurate on simple line graphs. Multivariate analysis revealed that format type, participant age and education were independent predictors of accuracy rates. Patients' ratings also varied across formats both for ease of understanding scores (F = 12.1, P < .0001) and for helpfulness scores (F = 13.2, P < .0001), with line graphs being rated highest on both outcomes.

CONCLUSION: Patients generally prefer a simple linear representation of group mean HRQL scores, and can accurately interpret data presented in this format more than 98% of the time irrespective of their age group and educational level. The findings have important implications for the communication of clinical trial HRQL results.

Supported by an operating grant from the National Cancer Institute of Canada. The funding agreement ensured the authors' independence in designing the study, interpreting the data, writing and publishing the report.

Presented at the 39th annual meeting of the American Society of Clinical Oncology, Chicago, IL, May 31-June 3, 2003.

Authors' disclosures of potential conflicts of interest are found at the end of this article.

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