Long-Term Cancer Survivors Still Need Guidance About Screening, Side Effects, Lifestyle

Q. What are the key findings of your study?We found that long-term cancer survivors have unmet health information needs, even close to a decade after first being diagnosed with cancer. This group is especially interested in receiving information on cancer screening, the long-term side effects of cancer and treatment, and how to live a healthy lifestyle (e.g. diet and physical activity). We found that information needs may differ depending on a person’s age, race/ethnicity, education level, type of cancer, and even how they rate their own health.

All of the information needs that we identified in this group are covered in a Survivorship Care Plan (SCP), which is a document provided to patients after completing cancer treatment. This plan typically summarizes the treatment and describes long-term side effects, screening for cancer recurrence or second cancers, advice on healthy living, and support in the community.

Most of the people in our study did not originally receive a SCP because it was not common practice 10 years ago. We also found that the most preferred way to receive this information is in a print format, which is current practice.

Q. What are the needs of short-term and long-term cancer survivors after treatment?Shortly after cancer treatment, patients typically want information on issues related to their treatment, prognosis, rehabilitation, managing long-term treatment side effects, and healthy habits. Longer-term survivors still want that information, but also are interested in what tests and treatments they should have, cancer screening, and information on emotional and financial support.

Q. What is the best way for healthcare providers to communicate with long-term survivors?

We found that it is important to recognize that even years later, cancer survivors may still need health information related to their cancer. A lot of this information can be provided through the current format of the SCP.

Q. Were you surprised to learn that survivors of different generations want print information? Did anything else surprise you?

Our population was an older generation of cancer survivors. Most were around 55 years old when they were diagnosed, so they are now closer to 65 or 70. The preferences of long-term survivors for receiving health information may change moving forward, but in our study population, more people still prefer information in print versus on the internet.

We did find that people who use the internet trust sources like the National Cancer Institute and the American Cancer Society websites, so this is something to consider in the future for providing information.

Even though our study participants ranked print as their top preference, it is important to note that participants were able to select multiple formats. It may be that a variety of sources is optimal. As future cancer survivors come from a younger, more technology-driven generation, preferences may shift to favor the internet. Future studies should take this into consideration.

What do you think was interesting about this study?As part of the new Commission on Cancer standards, all new cancer survivors will receive materials like the SCP. However, for our study population of long-term survivors, unless they had another cancer diagnosis, they likely never received a treatment summary and recommendations for long-term follow-up. Our study shows that people are still interested in this information even years after being diagnosed with cancer. The information in a SCP could still be of great benefit to long-term cancer survivors.

Mary Playdon, MPH, is a researcher with Yale School of Public Health; Brenda Cartmel, PhD, is a senior researcher with Yale School of Public Health and a member of Yale Cancer Center; Tara Sanft, MD, is an assistant professor of Medicine (medical oncology); and medical director of Adult Survivorship for the Yale Cancer Center Survivorship Clinic