An important part of the follow-up plan includes recommendations for reducing risks of future health problems. Cancer survivors are at greater risk for developing a second cancer, of either the same or another type, and screening according to national guidelines should be part of their regular healthcare.[7–9] Preventive health behaviors such as smoking cessation, alcohol(Drug information on alcohol) and dietary modifications, and regular weight-bearing exercise have all been shown to reduce risk in cancer survivors.[10,11] Inclusion of these recommendations into the follow-up plan takes full advantage of the “teachable moment,” the phenomenon that occurs at the completion of cancer treatment, when people are most open to making changes in health behaviors.
Finally, the care plan should clearly define the responsibilities of cancer-related, non–cancer-related, and psychosocial providers. One study found that one-third of cancer survivors were not sure which physician was in charge of their cancer follow-up. Clear designation of who is responsible for the various aspects of care can optimize care coordination, avoid unnecessary use of resources, and ensure that care does not “fall through the cracks.” Patients should be encouraged to provide a copy of the care plan to their current primary care providers and other healthcare providers throughout life.
Barriers to providing care plans
While most would agree that informing patients about their cancer treatment is the right thing to do, widespread adoption of care plans is met by obstacles throughout our healthcare system. Preparation of a comprehensive care plan requires access to treatment records that include pathology and operative reports, details of chemotherapy and radiation treatments, and summaries of other relevant events that occurred during cancer treatment. Because most patients are treated in community settings, care is often spread across multiple specialists and treatment facilities. One complete record does not exist.
Gathering these records, particularly in the absence of an electronic system, can be challenging. Abstracting the relevant information from the records and writing the comprehensive care plan can be time-consuming and currently is not reimbursable by third-party payors.
A significant barrier to care planning is the absence of clinical practice guidelines for follow-up care. Clinical practice guidelines are essential to decrease unnecessary and harmful care and to facilitate necessary care, but without high quality evidence or expert consensus, there is reluctance among oncology organizations to make formal recommendations. Currently, the American Society of Clinical Oncology (ASCO) has developed evidenced-based follow-up guidelines for breast and colorectal cancers only.
While guidelines are best when based on evidence, they can still be useful when based on consensus. The NCCN has incorporated consensus-based follow-up care into some of its disease guidelines. The Children’s Oncology Group has developed comprehensive guidelines for monitoring long-term and late effects of cancer therapy for pediatric cancer survivors based on evidence where it exists, and based on consensus where it does not. Many of the recommendations are also applicable to adults.
Prospective development of a treatment summary can eliminate the struggle for collection of records when treatment ends, and is a long-term goal for many organizations and practices. ASCO has created sample templates for the prospective recording of treatment, as well as a one-page summary care plan containing follow-up recommendations for breast and colorectal cancers; expansion to include other cancer types is under way. There is also a generic template for use with any cancer. All of the templates are available on the ASCO web site.
Other groups have developed care plan templates and made them available as resources. Table 1 lists Internet-based resources for survivorship care plan development. Haylock et al. highlight the opportunity for nurses to adopt survivorship care planning as part of their role in educating and counseling patients and providing continuity of care across health transitions.
A comprehensive template as well as guidelines are included in Haylock’s article and are available via the Internet. The LIVESTRONG Care Plan was developed by the Lance Armstrong Foundation in partnership with the OncoLink web site of the University of Pennsylvania, which guides patients in creating their own care plans based on specific treatment information. It is quick and simple to use, and ideally the patient will develop the care plan in conjunction with the care provider.