Cancer-Related Internet Use and Online Social Networking Among Patients in an Early-Phase Clinical Trials Clinic at a Comprehensive Cancer Center.

PURPOSE: We examined patterns, correlates, and the impact of cancer-related Internet use among patients with advanced cancer in a phase I clinical trials clinic for molecularly targeted oncologic agents. METHODS: An anonymous questionnaire on Internet use for cancer-related purposes that incorporated input from phase I clinical trial oncologists and patients was self-administered by patients age ≥ 18 years in a phase I clinic. Multivariable modeling was used. Data were analyzed for the overall sample and by generation, which was defined by year of birth. RESULTS: Of 291 patients (52% women, 82% non-Hispanic white, 50% age ≤ 60 years), 62% were cancer-related Internet users (CIUs). Cancer-related Internet use was associated with an income of ≥ $60,000 (odds ratio, 2.42; P = .004). CIUs used the Internet to learn about their cancer (85%), treatment adverse effects (65%), clinical trials (52%), new alternative treatments (42%), and symptom management (41%). CIUs most frequently used the hospital Web site (70%) to learn about clinical trials, followed by ClinicalTrials.gov (42%) and search engines (41%). The emotional impact of Internet-derived cancer information on CIUs varied-56% felt empowered, 34% anxious, 29% relieved, and 17% confused. Cancer-related Internet information made 51% of patients from the Millennial (born after 1990) and Generation X/Y (born 1965 to 1990) CIU populations anxious compared with < 29% of CIUs from older generations (born 1964 and before). Most CIUs desired more online information about new experimental drugs (91%) and US Food and Drug Administration-approved drugs for cancer (72%). CONCLUSION: As most phase I patients use the Internet for cancer-related purposes, the Internet overall and hospital Web sites should provide more extensive, pertinent, and helpful information on clinical trials and cancer treatment to phase I patients.

Patient knowledge and information-seeking about personalized cancer therapy.

BACKGROUND: Understanding patients' knowledge and prior information-seeking regarding personalized cancer therapy (PCT) may inform future patient information systems, consent for molecular testing and PCT protocols. We evaluated breast cancer patients' knowledge and information-seeking behaviors regarding PCT. METHODS: Newly registered female breast cancer patients (n=100) at a comprehensive cancer center completed a self-administered questionnaire prior to their first clinic visit. RESULTS: Knowledge regarding cancer genetics and PCT was moderate (mean 8.7±3.8 questions correct out of 16). A minority of patients (27%) indicated that they had sought information regarding PCT. Higher education (p=0.009) and income levels (p=0.04) were associated with higher knowledge scores and with seeking PCT information (p=0.04). Knowledge was not associated with willingness to participate in PCT research. CONCLUSION: Educational background and financial status impact patient knowledge as well as information-seeking behavior. For most patients, clinicians are likely to be patients' initial source of information about PCT. Understanding patients' knowledge deficits at presentation may help inform patient education efforts.

Commonly cited website quality criteria are not effective at identifying inaccurate online information about breast cancer.

BACKGROUND: Consumers increasingly consult the Internet for breast cancer information. Concerned about accuracy, multiple organizations developed quality criteria for online content. However, the effectiveness of these tools is unknown. The authors determined whether existing quality criteria can identify inaccurate breast cancer information online. METHODS: The authors identified 343 unique webpages by using 15 breast cancer-related queries on 5 popular web search-engines. Each page was assessed for 15 quality criteria and 3 website characteristics, link type (sponsored or not), search engine used to find the page, and domain extension. Two clinician-reviewers independently assessed accuracy and topics covered. The authors then determined whether quality criteria, website characteristics, and topics were associated with the presence of inaccurate statements. RESULTS: The authors found 41 inaccurate statements on 18 webpages (5.2%). No quality criteria or website characteristic, singly or in combination, reliably identified inaccurate information. The total number of quality criteria met by a website accounted for a small fraction of the variability in the presence of inaccuracies (point biserial r=-0.128; df=341; P=.018; r2=0.016). However, webpages containing information on complementary and alternative medicine (CAM) were significantly more likely to contain inaccuracies compared with pages without CAM information (odds ratio [OR], 15.6; P<.001). CONCLUSIONS: Most breast cancer information that consumers are likely to encounter online is accurate. However, commonly cited quality criteria do not identify inaccurate information. Webpages that contain information about CAM are relatively likely to contain inaccurate statements. Consumers searching for health information online should still consult a clinician before taking action.

Searching for cancer-related information online: unintended retrieval of complementary and alternative medicine information.

PURPOSE: The Web is an important source of health information for consumers. Use of complementary and alternative medicine (CAM) is also increasing. Therefore, we studied the likelihood that consumers will incidentally encounter CAM information while searching the Web and the factors that influence retrieval of CAM information. METHODS: We evaluated results retrieved by 10 cancer-related searches on six common search engines. RESULTS: Of 1121 search results, 16.2% displayed CAM information. Sponsored (i.e., paid) results were more likely to display CAM information than non-sponsored results (38% versus 7.5%, p < 0.001). In Overture and Google, sponsored results accounted for 51% and 39% of results on the first page. These search engines also retrieved more CAM web pages. Search engines distinguished sponsored and non-sponsored results, but disclosure statements describing the differences were confusing. Cancer type used as the search keyword did not influence the number of CAM web pages retrieved. However, synonyms of cancer differed in their retrieval of CAM web pages (p < 0.001). Consistent with prior studies of Web search engine overlap, we found that 28% of CAM results were retrieved by two or more search engines. CONCLUSIONS: Clinicians should help consumers recognize sponsored results and encourage search engines to clearly explain sponsored results.

Usability of quality measures for online health information: Can commonly used technical quality criteria be reliably assessed?

PURPOSE: Many criteria have been developed to rate the quality of online health information. To effectively evaluate quality, consumers must use quality criteria that can be reliably assessed. However, few instruments have been validated for inter-rater agreement. Therefore, we assessed the degree to which two raters could reliably assess 22 popularly cited quality criteria on a sample of 42 complementary and alternative medicine Web sites. METHODS: We determined the degree of inter-rater agreement by calculating the percentage agreement, Cohen's kappa, and prevalence- and bias-adjusted kappa (PABAK). RESULTS: Our un-calibrated analysis showed poor inter-rater agreement on eight of the 22 quality criteria. Therefore, we created operational definitions for each of the criteria, decreased the number of assessment choices and defined where to look for the information. As a result 18 of the 22 quality criteria were reliably assessed (inter-rater agreement > or = 0.6). CONCLUSIONS: We conclude that even with precise definitions, some commonly used quality criteria cannot be reliably assessed. However, inter-rater agreement can be improved with precise operational definitions.

Inter-observer agreement for quality measures applied to online health information.

Many quality criteria have been developed to rate the quality of online health information. However, few instruments have been validated for inter-observer reliability. Therefore, we assessed the degree to which two raters agree upon the presence or absence of information based on 22 popularly cited quality criteria on a sample of 21 complementary and alternative medicine websites. Our preliminary analysis showed a poor inter-rater agreement on 10 out of the 22 quality criteria. Therefore, we created operational definitions for each of the criteria, decreased the allowed choices and defined a location to look for the information. As a result 15 out of the 22 quality criteria had a kappa >0.6. We conclude that even with precise definitions some commonly used quality criteria to assess the quality of health information online cannot be reliably assessed. However, inter-rater agreement can be improved by providing precise operational definitions.

Cancer-related complementary and alternative medicine online: factors affecting information retrieval.

Cancer patients increasingly turn to the Internet for health information. As the use of complementary and alternative medicine (CAM) is also increasing, we studied the likelihood that consumers will incidentally encounter CAM information while searching the Internet and the factors that influence CAM information retrieval. We evaluated results retrieved from ten cancer-related searches in six common search engines, and found that 16.2% of 1121 results contained CAM information. Sponsored (i.e. paid) results contained more CAM information than non-sponsored results (38% vs. 7.5%, p<0.001). Sponsored results in the Overture and Google search engines accounted for 51% and 39% of results on the first page. These search engines also retrieved the most CAM web pages. The type of cancer used as the search keyword did not influence the number of CAM-related web pages retrieved. However, the synonyms of cancer used as search keywords differed in their retrieval of CAM web pages (p<0.001). We conclude that clinicians should help consumers recognize sponsored listings and encourage search engines to clearly identify sponsored results.

Efficacy of quality criteria to identify potentially harmful information: a cross-sectional survey of complementary and alternative medicine web sites.

BACKGROUND: Many users search the Internet for answers to health questions. Complementary and alternative medicine (CAM) is a particularly common search topic. Because many CAM therapies do not require a clinician's prescription, false or misleading CAM information may be more dangerous than information about traditional therapies. Many quality criteria have been suggested to filter out potentially harmful online health information. However, assessing the accuracy of CAM information is uniquely challenging since CAM is generally not supported by conventional literature. OBJECTIVE: The purpose of this study is to determine whether domain-independent technical quality criteria can identify potentially harmful online CAM content. METHODS: We analyzed 150 Web sites retrieved from a search for the three most popular herbs: ginseng, ginkgo and St. John's wort and their purported uses on the ten most commonly used search engines. The presence of technical quality criteria as well as potentially harmful statements (commissions) and vital information that should have been mentioned (omissions) was recorded. RESULTS: Thirty-eight sites (25%) contained statements that could lead to direct physical harm if acted upon. One hundred forty five sites (97%) had omitted information. We found no relationship between technical quality criteria and potentially harmful information. CONCLUSIONS: Current technical quality criteria do not identify potentially harmful CAM information online. Consumers should be warned to use other means of validation or to trust only known sites. Quality criteria that consider the uniqueness of CAM must be developed and validated.

Evaluating the prevalence, content and readability of complementary and alternative medicine (CAM) web pages on the internet.

Complementary and alternative medicine (CAM) use is growing rapidly. As CAM is relatively unregulated, it is important to evaluate the type and availability of CAM information. The goal of this study is to deter-mine the prevalence, content and readability of online CAM information based on searches for arthritis, diabetes and fibromyalgia using four common search engines. Fifty-eight of 599 web pages retrieved by a "condition search" (9.6%) were CAM-oriented. Of 216 CAM pages found by the "condition" and "condition + herbs" searches, 78% were authored by commercial organizations, whose pur-pose involved commerce 69% of the time and 52.3% had no references. Although 98% of the CAM information was intended for consumers, the mean read-ability was at grade level 11. We conclude that consumers searching the web for health information are likely to encounter consumer-oriented CAM advertising, which is difficult to read and is not supported by the conventional literature.