Applied Evidence

Partnering to optimize care of childhood cancer survivors

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References

After treatment, patients should receive survivorship care plans

For health care providers to use COG Guidelines effectively across medical disciplines, it is important to know critical pieces of the patient’s cancer diagnosis and treatment history. In 2006, the Institute of Medicine released a report14 recommending that all cancer survivors be given a comprehensive care summary and follow-up plan when they complete their primary cancer care. More recently, the Commission on Cancer of the American College of Surgeons has mandated that, in order to be a cancer program accredited by the Commission, all cancer patients must be given a survivorship care plan after completing treatment.15 Generated by the treating cancer center, these care plans are meant to concisely communicate a patient’s cancer diagnosis, treatment, and long-term risks to other health care providers (across disciplines and institutions).

What’s included in a survivorship care plan?

The survivorship care plan is a paper or electronic document created by the treating institution that contains 2 components: a treatment summary and a long-term care plan based on medical/treatment history. The treatment summary includes, at a minimum, general background information (eg, demographics, pertinent medical history, diagnostic details, and significant treatment complications) and a therapeutic summary (such as dates of treatment, protocol, and details of chemotherapy, radiation, hematopoietic stem-cell transplant, and/or surgery).

The second component, the long-term care plan, details potential long-term effects specific to the treatment received, and recommendations for ongoing follow-up related to long-term risk (FIGURE). The post-treatment plan is primarily based on COG Guideline recommendations. Many institutions are introducing an electronic-based survivorship care plan, either in addition to or in replacement of a paper-based care plan. Electronic-based care plans have several benefits for patients and providers, including increased accessibility, and some offer the ability to easily update follow-up recommendations, as guidelines change, without the need for manual entry.

Sample survivorship care plan image

Shared care for cancer survivors: Oncology and primary care

Numerous models of cancer survivorship care have been described, including care by the treating oncologist, a dedicated cancer survivorship program, or follow-up completed by PCPs. There is no consensus on the best model, although many have noted that shared care is a critically important component of successful cancer survivorship care,6,16–18 and appears to be the preferred model of PCPs.19

Fewer than 25% of childhood cancer survivors continue to be followed by a cancer center and are at risk for missing survivorship-focused care or recommended screening.

Shared care, as the name implies, involves care that is coordinated between 2 or more health providers across specialties or locations.20 This model has shown improved outcomes in other chronic disease-management models, such as those for diabetes21 and chronic renal disease.22 One study23 found that colorectal cancer survivors who were seen by both an oncologist and a PCP were significantly more likely to receive recommended testing and follow-up to promote overall health than when they were followed by either physician alone. Information sharing between oncology and PCPs is critical to maintaining and promoting optimal health and well-being in cancer survivors, and requires ongoing communication and a concerted effort to facilitate and maintain collaboration between oncology specialists and other health care providers.6,17

Role of the cancer center in survivorship care

Although every cancer center has a slightly different timeline and structure in terms of survivorship care, there are common themes across programs regarding the type of care provided. Immediately following treatment, care is focused on surveillance for recurrence, with appointments ranging from monthly to a few times a year. This care is most often provided by the primary oncologist.

Survivorship care plans are generated by the treating cancer center and concisely communicate to other health care providers a patient's cancer diagnosis, treatment, and long-term risks.

The next phase of care is reached 2 to 5 years after treatment, when recurrence is no longer a significant risk, and care is focused on monitoring and treating late effects. Depending on the center, this care may be coordinated by a dedicated survivorship clinic, the primary oncologist, or the PCP. In some models,6 the survivorship team is integrated into the patient’s care from the beginning of treatment, while others do not become active in care until the patient is considered cured of disease. In all models, a survivorship care plan should be completed after treatment has ended and before transitioning care to a PCP.

In our institution’s model, we have a survivorship program that serves patients who are more than 5 years from the completion of their treatment. Our survivorship team is comprised of a pediatric oncologist, advanced practice practitioner (APP) coordinator, a project coordinator, a clinical social worker, and a research staff member. Patients are seen every one to 2 years, depending on their overall risk for late effects. For those who are seen every other year, we are available to the PCP for questions or concerns, and the survivorship team connects with the CCS by phone to screen for any change in health status that would alter recommendations for an earlier follow-up at the oncology center.

A typical visit to our survivorship clinic includes completion of an annual health questionnaire, which addresses current health issues, as well as screening for anxiety, depression, nicotine, alcohol, and drug use. This questionnaire is reviewed by the pediatric oncologist and is used to tailor screening, referrals, and patient education based on current complaints. The oncologist also performs a thorough physical exam with special attention to areas in which late effects may occur (eg, skin exam in areas of previous radiation). In addition, each patient receives an individualized treatment summary based on COG guidelines, which is updated before each visit by the APP coordinator. The APP coordinator reviews the document at each visit and offers patient education and health maintenance counseling.

Ensuring patients aren’t lost to follow-up. In our experience, numerous patients become lost to follow-up as they age, enter college or the workforce, or move away. So, rather than attempting to follow these patients for life, we work to transition patient care to a PCP of their choice, particularly if they are at least 21 years old and more than 10 years post-diagnosis. However, we will work to transition at any time at the request of the CCS. Even when a patient’s ongoing care is transitioned to a PCP, we will remain as a continuing resource to PCPs and CCSs on an as-needed basis.

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