PubMed · 15661683
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Stephen F Sener. Disease without borders.. https://doi.org/10.3322/canjclin.55.1.7
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BACKGROUND: While information websites have been developed by major cancer organizations, their appropriateness for patients in multiethnic, multilingual public hospital settings has received limited attention. OBJECTIVE: The objective of the study was to determine the utility of cancer information websites for a public hospital patient population. METHODS: A 70-item questionnaire was developed to evaluate cancer information seeking behavior, Internet access and use, and content appropriateness of two cancer information websites: People Living with Cancer from the American Society of Clinical Oncology (ASCO) and Breast Cancer Info from the Susan Komen Breast Cancer Foundation (SKF). Interviews were conducted with consecutive consenting oncology patients seen in a public hospital oncology clinic. RESULTS: Fifty-nine persons participated in the survey. The response rate was 80%. Participants were Caucasian (25%), African American (19%), Hispanic (42%), and Asian/Pacific Islander (11%). English was the primary language in 53% of participants, 56% had a high school education or less, and 74% had an annual income less than US 35000 dollars. With respect to computer and Internet use, 71% had computer access, and 44% searched for cancer information online, with more being interested in obtaining online information in the future (63%). Participants who had computer access were likely to be English speaking (P = .04). Those less likely to have previously used a computer tended to have a lower annual income (P = .02) or to be males aged 55 years or older (P < .05). When shown sample content from the two websites, almost all participants stated that it was "easy to understand" (ASCO 96%, SKF 96%) and had "easy to understand terms" (ASCO 94%, SKF 92%). Somewhat fewer respondents agreed that the websites provided "information they could use" (ASCO 88%, SKF 80%) or that they would return to these websites (ASCO 73%, SKF 68%). The majority planned to "discuss website information with their oncologists" (ASCO 82%, SKF 70%). CONCLUSIONS: Multiethnic, multilingual cancer patients at a public county hospital commonly had Internet access and found the content of two websites representative of major cancer organizations to be both understandable and useful.
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Enhancements to cancer surveillance systems are needed for meeting increased demands for data and for developing effective program planning, evaluation, and research on cancer prevention and control. Representatives from the American Cancer Society, Centers for Disease Control and Prevention, National Cancer Institute, National Cancer Registrars Association, and North American Association of Central Cancer Registries have worked together on the National Coordinating Council for Cancer Surveillance to develop a national framework for cancer surveillance in the United States. The framework addresses a continuum of disease progression from a healthy state to the end of life and includes primary prevention (factors that increase or decrease cancer occurrence in healthy populations), secondary prevention (screening and diagnosis), and tertiary prevention (factors that affect treatment, survival, quality of life, and palliative care). The framework also addresses cross-cutting information needs, including better data to monitor disparities by measures of socioeconomic status, to assess economic costs and benefits of specific interventions for individuals and for society, and to study the relationship between disease and individual biologic factors, social policies, and the environment. Implementation of the framework will require long-term, extensive coordination and cooperation among these major cancer surveillance organizations.