Caring for Pediatric Cancer Survivors: Partnership Is Essential

The news about childhood cancer survivors continues to improve. Through organized clinical trials, pediatric oncologists have discovered treatments that can now cure almost 80% of children who are diagnosed with cancer. Currently, there are more than 270,000 pediatric cancer survivors living in the United States. These numbers will continue to grow, making it more and more likely that primary care providers (PCPs) will encounter cancer survivors in their daily practice. It is important for oncologists and PCPs to work together to care for this special population of patients.

When Therapy Ends

Families often struggle with the initial transition back to primary care after therapy ends. While they still have routine follow-up for their cancer, not every medical issue requires attention from their oncologist. Patients are encouraged and may need to be redirected to contact their pediatrician’s office for routine medical care.

As time passes, the number and intensity of oncology follow-up visits diminish and some sense of normalcy settles in. This chapter of the after-therapy experience for pediatric cancer survivors varies, depending on the intensity of treatments used to cure their disease. Most survivors will do quite well long-term, with minimal health issues related to their cancer or treatment. Other patients may experience more long-term effects and require closer medical monitoring throughout their lifespan. At The Children’s Hospital of Philadelphia, we understand there is a need for specialized care in a clinic that focuses specifically on the needs of survivors. The Cancer Survivorship Program at CHOP helps patients and family members navigate life after cancer, including both the physical and emotional issues they may face. Once a patient is at least 5 years from diagnosis and 2 years from his or her last cancer therapy, a visit to the Survivorship Clinic can occur. A typical visit involves:

• A meeting with a pediatric oncologist or a nurse practitioner who specializes in the care of childhood cancer survivors to review previous therapy and potential long-term effects
• A complete physical exam and laboratory and diagnostic testing as needed
• Development of a plan of care for management of any late effects with referral to specialists as needed
• Guidance on ways to improve quality of life and future health
• Availability of a psychologist and/or nutritionist as needed While some patients may require this level of specialty care throughout their lives, others can eventually stop oncology follow-up and return to their PCP for all of their medical needs.

Key Components of a Successful Partnership

No matter where the patient may fall on this survivorship continuum, partnership between the CHOP oncologist and the PCP is paramount. There are several key components to this partnership:

Correspondence: This begins with the initial referral to the Cancer Center and should include details on the recent history, reason for referral and any diagnostic studies already performed. Similarly, it is the specialist’s duty to send information back to the primary care physician on diagnosis, planned treatment and the patient’s progress over time. Once a patient is off therapy, then correspondence from oncology to the primary’s practice should include a treatment summary and recommendations for risk-based surveillance for late effects of therapy over the patient’s lifetime.

Communication: Open lines of communication between the oncologist and the PCP are important. Someone at CHOP is always available to discuss patient issues should concerns arise.

COG Guidelines: The Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers are helpful for healthcare professionals who do not regularly care for survivors of pediatric malignancies.

Consistency of Message: It is important patients and parents hear from both their oncologist and PCP that, now that therapy is complete, a visit to the pediatrician/primary care physician should be the first stop for their medical needs.

Community: It is not an “us versus them” scenario when caring for our cancer survivors. While CHOP’s Cancer Center oncologists provided the treatments to help cure the child’s cancer, we are only one part of the team. It is a community of healthcare providers, with the primary care physician at the hub, that will provide ongoing follow-up these survivors will need as they move through their lives. Fostering this sense of community with our patients and families will help them to eventually make the transition from on therapy to survivorship.

Referral Information

For physician-to-physician questions and guidance regarding pediatric cancer, call CHOP’s Physician-Only line at 1-888-ONC-CHOP (1-888 662-2467) or email choprefonco@email.chop.edu.

To reach the specific programs highlighted in this issue, call 215-615-5678 for Proton Therapy; 267-426-5877 for the Pediatric Hereditary Cancer Predisposition Program; and 215-590-0432 for the Cancer Survivorship Program.