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National Cancer Institute

Cancer Survivors-Successfully Swimming or Struggling to Stay Afloat in a Sea of Cancer-Related Information?

Neeraj Arora, Ph.D.
Outcomes Research Branch
National Cancer Institute
Bethesda, MD

  • Strategies are needed to support information management efforts of cancer survivors and their family members. There are little data on the information needs of cancer survivors posttreatment (10 percent of 92 studies published between 1980 and 2003 addressed this issue). What data there are suggest that cancer survivors face difficulties obtaining information. Many report that significant effort was needed to find information, leading to feelings of frustration; information often was difficult to understand; and they had concerns about information quality.
  • Information needs categories for survivors at 2 to 5 years post-diagnosis include recommended follow-up tests and treatments, information on health behaviors to reduce cancer risk (i.e., diet, nutrition, physical activity), long-term and side effects of treatment, interpersonal and emotional issues, how to keep health insurance and obtain coverage for late effects, and sex- and fertility-related issues.
  • The Health Information National Trends Survey (HINTS) showed that 63 percent of cancer survivors can be categorized as "seekers" of information and 37 percent as "non seekers." Non seekers are more likely to have less than a high school education and be 65 years of age or older. Both seekers and non seekers preferred to receive information from health care providers rather than from the Internet. As a "first source" of cancer information, however, health care providers and the Internet were accessed nearly equally.
  • People with a family history of cancer are as likely to seek information as cancer survivors, although they are more likely than survivors to use the Internet as a first source of information (health care providers are the least-used source of information for this group). Those with a family history of cancer also are less likely than survivors to consider the information they do find helpful.
  • No organized, integrated system exists to provide survivors with access to support. Web-based technologies should be integrated to provide a seamless environment of accessible, unfailing, and deep support available at all times.

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