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Abstract
Previous research has indicated that treatment staff often underestimate the informational needs of cancer patients. In this study, the authors determined the total number of information sources obtained and used to influence treatment decisions, and the clinical and demographic factors associated with the use of specific sources of information in cancer patients. Participants were identified by the statewide cancer registry and diagnosed in 2004 with breast, colorectal, lung, or prostate cancer. A self-administered mailed questionnaire elicited cancer treatments, demographics, and information sources used to make treatment decisions. Of those surveyed, 1,784 (66%) participated and responded to all questions regarding information use. Over 69% of study participants reported obtaining information from a source other than the treatment staff. Significant predictors of using additional information sources included younger age, higher income, higher education, complementary and alternative medicine (CAM) use, and reporting shared decision making (all p values <.01). Participants with a college degree were more likely to use the Internet (OR 3.7; 95% CI 1.5–9.0) and scientific research reports (OR 3.3; 95% CI 1.6–6.9) to influence treatment decisions compared with those without a high school degree. Support group use to influence treatment decisions was not associated with socioeconomic variables but did vary by cancer type and CAM use. The sources of information study participants obtained and used to influence treatment decisions varied strongly by socioeconomic and demographic variables. These findings provide a deeper understanding of the information needs of cancer patients and have implications for dissemination strategies that can minimize disparities in access to cancer information.
This study was supported through funds provided by the University of Wisconsin Paul P. Carbone Comprehensive Cancer Center, the Wisconsin Division of Public Health, and the Wisconsin Partnership Fund for a Healthy Future.
In addition to thanking the cancer survivors for participation in this study, the authors acknowledge study assistance provided by John Hampton, MS; Katie Kerns; Julie McGregor; Laura Stephenson; Jeanne Strickland, MA; as well as the guidance provided by Planning Committee members Kurt Oettel, MD; B. Alex Matthews, PhD; Sue Joy-Sobota; Ione Miedema, RN; Mary Baliker; Amy Conlon, MPH; Nancy Freeman; Martha Gaines, JD; Sara Karon, PhD; Cathy Pawlak; and Mark Wegner, MD, MPH.
Notes
*p value < .05.
†p value < .01.
‡p value < .001.
*Standard error.
†Least square means and p values corresponding to within-sample F statistics adjusted for cancer site, self-reported health, CAM use, education, income, decision-making process, reporting unexpected side effects, age, gender, and extent of disease.
‡Least square means obtained by restricting dataset to lung and colorectal cancer patients while adjusting for the variables described above.
*Odds ratio (OR) and confidence interval (CI) adjusted as appropriate for age, gender, education, income, decision-making process, reported use of complementary and alternative medicine, self-reported health, extent of disease, and cancer site.