Whereas the incidence of cancer among kids is increasing, death from childhood cancer is decreasing.1,2 As a result of increased survivorship, pediatricians need to think of cancer more like a chronic disease and develop strategies and practices to improve the health and well-being of their patients. Unfortunately, this is not a role that many physicians experienced in residency or received much formal training in since completing residency.
As primary care physicians, we will play significant roles in the care of our patients throughout their cancer journey: making a diagnosis; referring patients for further workup and treatment; monitoring for late effects of the cancer and treatment; providing emotional support; following up after treatment; and assisting with palliative and end-of-life care if treatment is not successful.
Making a diagnosis
Cancer can be elusive, and it is rarely at the top of the differential for patients presenting to our outpatient offices with common complaints. An acronym from the Pediatric Oncology Resource Center outlines many of the most common symptoms that may signal a possible cancer diagnosis (Table 1).3
Patient barriers in cancer survivorship
Once our patients become cancer survivors and enter into long-term follow-up, a number of different barriers exist, including fragmented care, lack of education, and problems in communication.
Fragmented delivery system
Pediatric cancer care is probably at bigger risk for fragmentation compared with adult patients because of specialization and regional availability of cancer services. Whereas continuity of care is extremely important, our systems have not performed well.4 While in active treatment, the patient may see a surgeon, oncologist, radiation oncologist, and other healthcare providers in addition to the primary care physician.
Continuity of care can be thought of as “. . . the systematic assurance of uninterrupted, integrated medical and psychosocial care of the patient, in accord with the patient’s wishes, from assessment of symptoms in the prediagnostic period, throughout the phase of active treatment, and for the duration of posttreatment monitoring and/or palliative care.”5
Ultimately, poor coordination of care will lead to poor quality of care.
Lack of knowledge
While it is better in pediatrics compared with adult populations of cancer survivors, only 35% of 635 members in the Childhood Cancer Survivorship Study identified that previous cancer treatment could lead to a serious medical condition.6 In that study, 45% responded negatively and nearly 20% did not know the impact. Additionally, only small numbers of patients received written summaries of their care to give to future provides to assist in their follow-up.