- by Stephanie Nutt
With more than 14 million cancer survivors alive in the United States (and this number is growing every year), resources and tools to help them coordinate their care are essential. One important tool to help survivors is a survivorship care plan.
At a basic level, a survivorship care plan includes in-depth information about cancer treatments and potential long-term or late effects, such as medical and psychosocial complications and their signs and symptoms. Additionally, survivorship care plans can include elements such as:
- Recommendations about tests for recurrence or second cancers.
- Potential long-term effects of cancer and treatment.
- Recommendations for how often survivors should see health care providers.
- Recommendations for healthy lifestyle behaviors.
- Information about reducing health risks.
- Community resources that can support cancer survivors.
In 2006, the Institute of Medicine (IOM) recommended that all patients completing treatment should receive a survivorship care plan. These tools were recommended because the IOM panel believed that they would improve communication and care coordination for survivors after treatment (for the full report, please visit this link). However, in the years since the IOM report, research on the impact of care plans on survivor outcomes has been limited.
Despite limited evidence, the LIVESTRONG Foundation, along with numerous other groups, including the National Comprehensive Cancer Network and the American College of Surgeons Commission on Cancer, still supports the use of care plans. We believe that it’s important for survivors to have information and make informed decisions after treatment ends. Notwithstanding the widespread support of care plans, many survivors still are not receiving them when they finish active treatment.
In 2012, the LIVESTRONG Foundation surveyed survivors to ask them about their experiences during and after treatment. Among the many topics covered in the survey, survivors were asked whether or not they had received a survivorship care plan.
Over 6,300 people diagnosed with cancer took our survey. Of the 5,315 who had completed treatment at the time of the survey, only 17% had received a survivorship care plan. Interestingly, the more recently survivors had completed treatment, the more likely they were to have received a care plan (see figure below). We believe that this may suggest positive changes in practice, as this may indicate that more providers offer care plans to survivors now. We also found that women and people without health insurance were less likely to receive survivorship care plans than other survivors.
We also examined how survivorship care plans have affected survivors’ care. Overall, we found that care plans could strengthen communication that patients and survivors have with their health care team. Compared to survivors who had not received a care plan, survivors who had received a care plan were more likely to feel confident that they could openly discuss health problems with their providers. Moreover, survivors with care plans were more likely to discuss long-term side effects of cancer treatment, emotional or social needs and lifestyle and health recommendations with their health care team.
In order to help ensure that all survivors get access to a survivorship care plan, the LIVESTRONG Foundation partnered with the University of Pennsylvania’s OncoLink team to deliver the LIVESTRONG Care Plan. Through this collaboration, survivors and health care providers can go online and create a care plan for free in just a few minutes. To find more information about survivorship care plans or to create one for yourself, visit www.livestrongcareplan.org.