Cancer Information Sources Used by Patients to Inform and Influence Treatment Decisions

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.

Who makes the decision regarding the treatment of clinically localized prostate cancer–the patient or physician?

“…Compared with patients aged 65 years, younger men were more likely to engage in patient-only versus physician-only decision-making, a finding similar to that of previous studies. 33,34 Younger men may be more likely to seek information from different sources, 34 including consultation from 3 physicians. 35 These activities may better equip patients to make decisions on their own and/or to communicate with physicians regarding their needs and treatment preferences.…”

A Telephone Helpline Assessment of Psychosocial Needs of Adults with Cancer Post Institute of Medicine (IOM) Recommendations

“…Many access the internet for cancer related information to learn about their disease or to help them make treatment related decisions [6] [8] [13]- [15]. Certain subgroups of people with cancer, primarily those who are older, have lower levels of education, or are unemployed may prefer other sources to obtain the information they need (e.g., support groups, cancer information services) [4] [16]- [20]. Older adults with cancer can have different information and support needs than those who are younger and are more likely to have difficulty processing and recalling information.…”

“…However, people with cancer frequently seek information from sources other than their healthcare providers [4] [12]. Many access the internet for cancer related information to learn about their disease or to help them make treatment related decisions [6] [8] [13]- [15].…”

“…Regardless of age or lifestyle all people with cancer and their family caregivers want accurate and timely information related to their disease to help inform their healthcare decision-making. Those who receive and understand information about their cancer are more involved in making decisions about their treatment and report greater satisfaction with their treatment choices [4] [8].…”

“…Cancer risk increases with age, so the number of survivors is expected to increase significantly over the next decade as the US population ages. People with cancer and their family caregivers want information about their disease, but these needs vary depending of the type of cancer, extent of disease, personal situation, and age [3] [4]. Although education about cancer diagnosis and treatment is usually provided to people with cancer and family caregivers by their healthcare providers, a discussion about social, lifestyle, and financial concerns is often lacking or inadequate [5]- [7].…”