As survival rates for pediatric cancer continue to improve, more and more pediatric practices include children who have been treated for cancer. Some patients are making the transition back to primary care after finishing their cancer treatment. Others are only a few years post-treatment and still being closely monitored for recurrence. Still others have survived five years or more and are considered cured. Whatever their circumstances, these patients can present challenges for primary care providers that range from early and late effects of treatment to emotional needs.

 1. Make sure you have a treatment summary and survivorship care plan from the patient’s oncologist. It is standard practice when a child transitions off active treatment for the oncology team to generate a summary for the patient and the primary care provider that includes an overview of the patient’s diagnosis and treatment, as well as information about what to expect in terms of disease surveillance in the immediate off-therapy period.

As the pediatrician, you should expect to receive recommendations for ongoing routine care such as a re-immunization schedule or recommendations for management of fevers. This communication can help clarify the pediatrician’s and the oncologist’s respective roles in the child’s ongoing routine care. These roles can differ from patient to patient based on the treatments they have undergone. A child who received hematopoietic stem cell transplants or is otherwise immunosuppressed, for instance, may need to see her oncologist for routine symptoms longer than a patient who received less intensive therapy.

Between three and five years after the completion of therapy, survivors often have a follow-up visit with their oncologist that focuses less on disease recurrence and more on organ toxicity from treatment, assessment of growth and development in the face of prior therapy, and treatment-related risks that should be evaluated. At that visit, a new survivorship care plan can be created to lay out which survivorship screenings should be conducted and when, and which subspecialists should be included in the child’s care going forward.

2. Understand that transition is a time of anxiety for children and families. When a child finishes cancer therapy, it is often cause for both celebration and anxiety for the family. Parents may be particularly anxious about the end of therapy, the knowledge that their child will not be seen as frequently in the oncology setting and the risk of cancer recurrence. If you have concerns about an increase in anxiety around this time, the oncology psychosocial provider at your patient’s cancer center can work with you to arrange for your patient and her family to be seen by a community provider.

In addition, families may express concerns about the risk of cancer in their other children. For example, if a child’s leukemia first manifested with a high fever, it is logical that the family would be anxious if her brother also developed a high fever. However, with the exception of families with a strong history of cancer, most pediatric cancers do not run in families, and a sibling’s risk of cancer is not significantly higher than normal. 

3. Keep watch for signs of early and late treatment effects, and be aware of screening recommendations.Issues around treatment-related toxicities can emerge both during treatment and shortly after transition. For instance, patients who received platinum-containing drugs might experience hearing loss. Effects of treatment that can develop after completion of therapy include:

• heart disease in survivors treated with anthracycline compounds
• neurocognitive and neuroendocrine dysfunction in patients who received radiation for a brain tumor
• male and female infertility, which may become a concern for survivors as they grow beyond their adolescent years

The Children’s Oncology Group publishes Web-based guidelines for survivors’ follow-up care. The primary care provider also has an active role to play. For instance, a child who received radiation to the brain might have difficulties with cognition that affect school performance. If problems arise, consider referring her for neurocognitive testing. Similarly, signs of growth delay, hypothyroidism or early or late puberty could be a sign of treatment-related endocrine dysfunction that warrants referral to an endocrinologist.

4. Understand the new services available in cancer centers with pediatric oncology programs.With the growing number of survivors, most large pediatric cancer programs deliver specialized services for survivors, including survivor clinics, which can provide multidisciplinary consultation or even ongoing care.  Available services often include parent/patient education, oncology assessment, mental health services, and medical subspecialty evaluations, including endocrinology, dermatology, neurology and cardiology, as needed.

Other possible interventions/services for survivors and their families include genetic counseling, fertility assessments, and support groups. Some programs provide camp opportunities, scholarships, and volunteer/team-building activities for eligible survivors.

5. Promote good eating, exercise and health habits.Good nutrition, exercise and tobacco avoidance are all part of good health and are just as important to childhood cancer survivors as they are to your other patients. Encouraging healthy lifestyles can help childhood survivors reduce later risks of chronic adult disease that may otherwise be elevated due to the treatment they received as children.

Lisa Diller is chief medical officer, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center and medical director, David B. Perini, Jr. Quality of Life Clinic. Peter Manley is an oncologist and director, Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic.