What Long-Term Cancer Survivors Want to Know

Written By:Hope Cristol
Doctor and patient navigator assisting patients


A recent study published in the Journal of Cancer Survivorship Research and Practice sheds light on how to give long-term cancer survivors the health information they want in the ways they want it.

Recent survivors may not have as great a need, as they’re more likely to have received survivorship care plans (SCPs) from their health care providers. SCPs generally include information on medical follow-up, long-term cancer and treatment effects, and how to live a healthy lifestyle.

However, survivors diagnosed many years ago may not have received detailed plans about how to manage their health – and their expectations – in the months and years after cancer. Recognizing this unmet need, researchers at Yale and the American Cancer Society investigated what kind of information long-term survivors want, as well their preferred sources for this information.

“This study highlights a high level of interest in cancer-related information, even among survivors who are almost 10 years out from their diagnosis and treatment. Cancer survivors are clearly very concerned about the long-term impact of their disease and its treatment,” says study co-author Kevin Stein, PhD, vice president of the Behavioral Research Center at the American Cancer Society. “They also want to know how to manage these problems and have the best possible quality of life.”

Researchers surveyed participants in the national American Cancer Society Study of Cancer Survivors to learn about survivors’ information needs 9 years post-diagnosis. More than 3000 survivors completed the survey. Their average age was around 65 years old, and more than 1000 survivors reported their education level was “high school or less.”

When respondents were asked, “What topics would you currently like to have more information about?” the top 3 answers were:

  • 42.5%: Cancer screening tests you should have for other types of cancer
  • 33.1%: Possible long-term side-effects of treatment
  • 31.9%: Behaviors you should adopt to be more healthy (diet, exercise)

And the bottom three:

  • 15.5%: Cancer-related resources and information (e.g. internet-based sources or telephone numbers of support organizations)
  • 12.8%: Information on the skills families and caregivers can use to support you
  • 9.0%: Possible consequences of having had cancer on your ability to continue work at your job

When it comes to how long-term survivors want to get their information, a book, magazine, or other printed publication (60%) and reading materials created for an individual based on lifestyle/family history (57.6%) far outweighed participating in an online cancer community website (11.0%) or an online support group (8.7%).

“An interesting outcome of this study was that not all cancer survivors want their information provided in the same way. These differences underscore the need to tailor SCPs to the specific needs and desires of the individual survivor,” Stein says.

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