Cancer Survivors Have Evolving Information Needs

Judging by the nature and topics of their information seeking, cancer patients’ information needs appear to differ depending on the type of cancer they have and where they are in their survivorship. Clinicians caring for cancer survivors may need to understand these needs in order to better address survivors’ concerns about cancer recurrence, late effects, and family members’ risks.

A three-year study of over 2,000 cancer survivors by the University of Pennsylvania’s Annenberg School for Communication discovered that, across survivors, the most frequently sought information was about cancer recurrence. However, interest in other topics varied by cancer type: breast cancer survivors were more likely to seek information about topics related to late effects and family members’ risks than prostate and colon cancer survivors. The patterns of seeking for these topics also changed over time. For instance, breast cancer survivors were less likely to seek information about their risks of cancer recurrence in later years than during the first year after their diagnosis. These findings are reported in the journal Cancer Epidemiology, Biomarkers & Prevention(online first, 2015).

The findings from the study are important because understanding how people seek cancer information during their cancer survivorship is an important component as clinicians help to address the physical and emotional issues their patients may be experiencing.  Clinicians may need to intervene at distinct points during the cancer survivorship period with timely information to address their patients’ concerns about cancer recurrence, late effects, and family members’ risks.

Researchers Andy Tan (Dana-Farber Cancer Institute), Rebekah H. Nagler (University of Minnesota), Robert C. Hornik (Annenberg School, University of Pennsylvania), and Angela DeMichele (Abramson Cancer Center, University of Pennsylvania) surveyed over 2,000 cancer survivors three times over a three-year period (2006 to 2008). The participants were survivors of colon cancer (males and females), breast cancer, and prostate cancer. They were, on average, in their early 60s, and the survey population was split evenly between men and women.

In this series of three surveys administered over three years, the researchers asked what type of information participants sought, including:

  • How to reduce the chance of their cancer coming back
  • How to reduce their chance of getting another cancer
  • How to reduce the risk of their children or family members getting breast/prostate/colon cancer or a different type of cancer
  • Whether they are at risk of having other health problems as a result of their cancer or treatment

Across all participants, reducing the chance of cancer coming back was the number one researched subject in all three surveys. Over 28 percent of cancer survivors expressed looking for information about their risk of cancer recurrence, compared with only 12 percent who said they had looked for information about the risks of their family members getting a different cancer from their diagnosis.

Cancer type was related to survivors’ information seeking patterns over time. Although breast cancer survivors were more likely to seek information about survivorship topics earlier in their trajectory, their seeking declined over time. In comparison, female colon cancer survivors were more likely to seek information about certain topics than female breast cancer survivors in later years. The researchers surmised this may be due to the ample amount of breast cancer information readily available and the existence of robust survivorship organizations to support breast cancer survivors.

“Not surprisingly, information about reducing risks of recurrence was the most frequently sought after topic among cancer survivors and over all three years of the study,” says Dr. Tan, lead author of the study. He noted that the study points to several “teachable moments” for clinicians, as well as avenues for additional study.

Additionally, Dr. Tan said, clinicians should consider the early survivorship timeframe as an opportunity to counsel patients on other positive health behaviors, from diet to smoking cessation, to help manage risks of cancer recurrence, since this window of opportunity may be when a patient is most open to receiving such information.

The study was supported by grants from the National Cancer Institute (P20CA095856 and P50CA095856). Additional support was provided by the Building Interdisciplinary Research Careers in Women’s Health (2 K12-HD055887) grant from the Eunice Kennedy Shriver National Institutes of Child Health and Human Development, the Office of Research on Women’s Health, and the National Institute on Aging, administered by the University of Minnesota Deborah E. Powell Center for Women’s Health.

Media Contact: Julie Sloane,, 215-746-1798