Cancer Survivors Take Charge!

Cancer survivorship care plans offer roadmap for survivors and providers

(RxWiki News) After active treatment ends, how is the health of a cancer survivor managed?  What does the survivor need to know about things like future screenings or long-term side effects of cancer treatment?  How will these issues be addressed?

Cancer survivors who used an online tool to develop an individualized care plan said the information offered new guidance they hadn’t received from their healthcare providers, according to a new study.

The tool, called the “LIVESTRONG Care Plan,” empowered the survivors to take a more active role in their own care and motivated them to make lifestyle changes to improve their overall health.

"Take an active role in your own cancer care plan."

Christine Hill-Kayer, MD, an assistant professor of Radiation Oncology at the University of Pennsylvania's Abramson Cancer Center, was the lead author of this new study that evaluated the effectiveness of the most popular interactive survivorship care plan available.

Survivorship care plans, first described in 2005 by the Institute of Medicine, are essentially a roadmap for the nearly 12 million cancer survivors living in the US today.

The customized map provides survivors and providers with information on follow-up screenings after active treatment ends, possible long-term side effects that may be encountered and specific issues relating to things like fertility.

University of Pennsylvania researchers developed the online LIVESTRONG Care Plan to bolster survivor healthcare knowledge, assist them in communicating with their providers and to encourage more active participation in their health care by adopting lifestyle changes.

The tool was launched in 2007 and has since been used by more than 30,000 patients and healthcare providers.

"By providing the survivor with the resources to know which tests need to be ordered in the form of a written document, a survivorship care plan enables the survivor to take more control of his or her care, and to participate in minimizing the 'slip through the cracks' phenomenon,” Dr. Hill-Kayer said in a prepared statement.

For this study, researchers surveyed 298 cancer survivors who had used the LIVESTRONG Care Plan between 2010 and 2013.

Study participants were survivors of breast, blood and gastrointestinal cancers, and had a median (middle) age of 51 years.

Users of the tool input specific information about themselves, including the specifics of their diagnosis and the types of treatment they received. A summary of their treatment was provided, which they can give to their health providers, along with tips on how to organize and coordinate ongoing care.

Study members then completed a survey about their experience with the tool one month after completing their plan, and the researchers discovered the following:

  • 93 percent of study members said the information was very useful.
  • 65 percent or survivors reported receiving new information they hadn’t heard from their providers.
  • 94 percent of the plan users said they would recommend it to others.
  • 62 percent felt the tool provided “just enough” information, and 72 percent said they felt “more informed” after using it.
  • 80 percent of participants indicated they had shared or planned to share the information with their healthcare team. Of those who had already shared the information, 80 percent said the information improved communication with their providers.
  • 63 percent felt that the survivorship care plan changed their healthcare participation, and over half (54 percent) of users reported that they had made or planned to make a lifestyle change in response to information they’d gotten from the care plan. The most common lifestyle changes were dietary modification and increased exercise.

The authors concluded, “Survivorship care plans are useful vehicles to promote lifestyle and behavioral changes, and to assist survivors with communication with healthcare providers."

Findings from this research were published in the August issue of the journal Cancer.

This work was funded by an educational grant from the LIVESTRONG Foundation. No conflicts of interest were disclosed.

Review Date: 
August 30, 2013