Frustrated and confused: The American public rates its cancer-related information-seeking experiences

BACKGROUND: Ensuring access to high-quality cancer-related information is important for the success of cancer prevention and control efforts. OBJECTIVE: We conducted a population-based assessment of the barriers faced by people searching for cancer information. DESIGN: Cross-sectional data from the National Cancer Institute's 2003 Health Information National Trends Survey. PARTICIPANTS: A nationally representative sample of individuals in the USA (n=6,369). MEASUREMENTS: We assessed whether respondents had ever sought cancer-related information and examined ratings of their information-seeking experiences and beliefs regarding causes of cancer and its prevention. Linear and logistic regression models were estimated to determine predictors of negative experiences and associations between experiences and cancer beliefs. RESULTS:Nearly one half (44.9%) of Americans had searched for cancer information. Many reported negative experiences, including the search process requiring a lot of effort (47.7%), expressing frustration (41.3%), and concerns about the quality of the information found (57.7%). Respondents lacking health insurance or a high school education experienced the greatest difficulty. Compared to those reporting the most positive experiences, information seekers reporting more negative experiences were more likely to report that almost everything caused cancer [odds ratio (OR) 2.0, 95% confidence interval (CI) 1.5-2.6], that not much can be done to prevent cancer (OR 2.7, 95% CI 1.9-3.8), and that it is hard to know which cancer prevention recommendations to follow (OR 3.2, 95% CI 2.3-4.5). CONCLUSIONS: While a significant proportion of the American public searches for cancer information, suboptimal experiences are common. Facilitation of information seeking will be critical for promoting informed decision making in cancer prevention and control.