As more and more children survive cancer, it is estimated that 1 in 300 young adults is a childhood cancer survivor. These survivors are returning in ever-greater numbers to their primary care providers (PCPs) for their ongoing care. PCPs may be challenged in caring for these survivors, because they were treated with many different therapies associated with rare, but significant, complications or “late effects.”
Lisa Diller, MD, chief medical officer of Dana-Farber/Boston Children’s and medical director of the David B. Perini, Jr. Quality of Life Clinic, spoke to MedPageToday about her five top tips for adult or family PCPs managing the care of adult patients who survived childhood cancer.
Below, Diller and Peter Manley, MD,a Dana-Farber/Boston Children’s neuro-oncologist and director of the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic, share their recommendations for pediatricians seeing cancer survivors who are still in their childhood or adolescent years.
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 of active treatment for the oncology team to generate a summary for the patient and the provider that includes an overview of the patient’s diagnosis and treatment.
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. Those 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 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 a cause for both celebration and anxiety for the
family. Parents can 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 child’s siblings. 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, such as hearing loss in patients treated with platinum-containing drugs. Depending on the treatments a child received, late- or long-term effects can include:
- heart disease in survivors treated with
- neurocognitive and neuroendocrine dysfunction in
patients who received radiation for a brain tumor
- male and female infertility, which may become a
concern to survivors as they grow beyond their adolescent years
The Children’s Oncology Group publishes Web-based guidelines for survivors’ follow-up care. But the PCP also has an active role to play. For instance, a child who received radiation to the brain can have difficulties with cognition that affect school performance. If problems arise, consider referring her for neurocognitive testing, ideally through a cancer survivorship program. Similarly, signs of growth delay, hypothyroidism or early or late puberty could be a sign of treatment-related endocrine dysfunction and warrant 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, where a single multidisciplinary consultation or ongoing care can be provided. 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.