Frustrated and Confused: The American Public Rates its Cancer-Related Information-Seeking Experiences

Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD 20892-7344, USA.
Journal of General Internal Medicine (Impact Factor: 3.42). 04/2008; 23(3):223-8. DOI: 10.1007/s11606-007-0406-y
Source: PubMed


Ensuring access to high-quality cancer-related information is important for the success of cancer prevention and control efforts.
We conducted a population-based assessment of the barriers faced by people searching for cancer information.
Cross-sectional data from the National Cancer Institute's 2003 Health Information National Trends Survey.
A nationally representative sample of individuals in the USA (n = 6,369).
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.
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).
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.

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Available from: Bradford W Hesse, Oct 08, 2015
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    • "The explanation for these demographic differences in seeking is complex, but research suggests several important factors that disproportionately affect vulnerable groups who already may be at higher health risk. For example, education is strongly positively associated with health literacy, and both are negatively associated with information seeking, such that people with less education are less likely to have adequate levels of health literacy and to seek health information from any source (Arora et al., 2008; Nielsen-Bohlman, Panzer, & Kindig, 2004). These barriers to information seeking are compounded among Latinos, who have the lowest rates of health literacy and patient activation in the country (Lubetkin, Zabor, Brennessel, Kemeny, & Hay, 2014; U.S. Department of Health & Human Services, 2009) and also have lower educational attainment and are less likely to seek information compared with non-Latino Whites (Kelly et al., 2010). "
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    ABSTRACT: Objective: Spanish-monolingual Latinos account for 13% of U.S. residents, and experience multiple barriers to effective health communication. Information intermediaries/proxies mediate between the linguistically-isolated and healthcare providers. This study characterizes the information needs of surrogate callers and their subjects to a U.S.-based Spanish-language radio health program. Methods: Content analysis of calls placed (N=281 calls). Results: Women made 70% of calls; 39.1% of calls were on behalf of children, 11.0% on behalf of parents/older adults, 18.5% on behalf of spouses/siblings/contemporary adults. Most common topics were disease symptoms/conditions (19.6%), cancer (13.9%), and reproduction/sexuality (12.9%). Calls for children were more likely than those for parents/other adults to pertain to current illness symptoms or conditions; calls for parents were more likely to be about cancer/chronic conditions. Half of all calls sought clarification about a previous medical encounter. Conclusion: Information-seeking surrogates may represent a useful strategy for linguistic minorities to overcome structural and individual barriers to health information access. Results suggest that Latinos are willing to seek information on behalf of friends and family and highlight the need for improved, culturally and linguistically appropriate health communication sources. Practice Implications: Leveraging Latinos’ natural familial social networks/willingness to share information may improve dissemination of culturally-and-linguistically-appropriate health information. Further implications for patient activation and doctor-patient communication are discussed.
    Health Promotion Practice 02/2015; DOI:10.1177/1524839915574246 · 0.55 Impact Factor
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    • "Not surprisingly, those that did seek health information after receiving their test results turned to the Internet. Participants raised some concern about the credibility of the information they found, especially about the quality of and trust in the information found on the Internet, comporting with other findings (Eysenbach et al. 2002; Arora et al. 2008; Zulman et al. 2011; Ahmed et al. 2012; Miller and Bell 2012; Wong et al. 2013a, 2013b Wong et al. 2013). "
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    ABSTRACT: As the practice of medicine has become more patient-driven, patients are increasingly seeking health information within and outside of their doctor's office. Patients looking for information and support are often turning to the Internet as well as family and friends. As part of a study to understand the impact of delivery method of genomic testing for type 2 diabetes risk on comprehension and health-related behaviors, we assessed participants' information-seeking and sharing behaviors after receiving their results in-person with a genetic counselor or online through the testing company's website. We found that 32.6 % of participants sought information after receiving the genomic test results for T2DM; 80.8 % of those that did seek information turned to the Internet. Eighty-eight percent of participants reported that they shared their T2DM risk results, primarily with their spouse/partner (65 %) and other family members (57 %) and children (19 %); 14 % reported sharing results with their health provider. Sharing was significantly increased in those who received results in-person from the genetic counselor (p = 0.0001). Understanding patients' interests and needs for additional information after genomic testing and with whom they share details of their health is important as more information and clinical services are available and accessed outside the clinician's office. Genetic counselors' expertise and experience in creating educational materials and promoting sharing of genetic information can facilitate patient engagement and education.
    Journal of Genetic Counseling 06/2014; 24(1). DOI:10.1007/s10897-014-9736-1 · 2.24 Impact Factor
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    • "Research has begun to examine the public's information-seeking experience with the growing body of health information publicly and availability (Akhu- Zaheya, Jagbir, Othman, & Ahram, 2013; Arora et al., 2008; Niederdeppe, Frosch, & Hornik, 2008; Rains, 2008)), and the public's preferences and curiosity of cancer related information (Akhu-Zaheya et al., 2013). Previous studies has identified the characteristics of people in the general population who vary in their likelihood of seeking information related to cancer (Sullivan & Finney, 2009) and their experiences with publicly and availability of cancer-related information (Arora et al., 2008) Building upon other researches; seeking cancer related information was found to be pivotal in shaping individuals health behavior. It was found that information seeking may be positively associated with preventive and screening behavior (Shim, Kelly, & Hornik, 2006). "
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