BALTIMORE — From the outside, pediatric oncology treatment may look like a puzzling maze for patients, their families, and even primary care providers.
“One question that tends to come up is, 'How exactly is that black box of pediatric oncology organized?' From the pediatrician's perspective, often it's hard to know who are the best people to get in touch with to get the best information,” said Dr. Patrick Brown, of the pediatric oncology department at Johns Hopkins University, Baltimore.
At his institution, a pediatric oncology fellow is usually designated as the first contact for a referred patient, and this fellow “is at the center of delivering care.
“The fellow works closely with the attending on service at the time. Together this pair will become the primary oncology team for the patient,” he said at a meeting on pediatric trends sponsored by Johns Hopkins University. This team devises a treatment plan that's carried out by a larger team of pediatric residents and physician extenders. Another important component is the multidisciplinary team, composed of surgeons, radiology oncologists, bone marrow transplant specialists, pediatric ICU staff, nurses, and social workers—all working closely with the fellow.
Each patient is assigned a primary team of oncologists who have longitudinal responsibility for the patient's care. “These providers are your primary point of contact. You should be hearing from either the attending or the fellow while the patient is being treated, and you should know how to get in touch with one or both of these individuals,” he said.
As with all good relationships, communication is a two-way street, and Dr. Brown suggested pediatricians initially try to refer patients to a medical center that can offer a multidisciplinary approach. While it's not necessary that a center be a transplant center, he urged physicians “to find a place that's a member of a clinical trials network for children with cancer. It's been documented over the years that children with cancer who are treated within the context of clinical trials have better outcomes.”
The pediatrician plays a key role in communicating many of the elements of the diagnosis, prognosis, and treatment plan to the child, parents, and any siblings and—most importantly—offers them emotional support. The pediatrician also provides essential background information on the patient to the oncology team.
Dr. Brown stressed it is the job of the oncologist to “open lines of communication with the pediatrician early and sustain them.
“We recognize the diagnosis of cancer is almost always the unexpected result of a series of rational diagnostic procedures, and that true cases where cues have been missed that cause a delay in diagnosis and negatively impact prognosis are exceedingly rare,” he said. While it often seems to parents that something should have been picked up earlier, “we do everything we can to dissuade them of that notion, because in the vast majority of cases that is not true. I think it's our job to help the parents understand that and to help you understand that.”
During treatment the oncology team takes responsibility for all medical issues, including primary care issues, but they may ask a pediatrician for assistance with blood work, referrals, and urgent care matters, especially for patients who live far from the cancer treatment center or for patients who are in “lower-intensity phases of therapy or on maintenance therapy,” he noted. In turn, oncologists should update pediatricians on all major events, such as complications or relapses.
After a patient is treated, the pediatrician should be given a comprehensive treatment summary by the oncologist. “It should not be something that's done over the telephone. This should be a document in your hand that you can refer to and put in your patient's chart,” said Dr. Brown. This document should contain information on the location of the cancer, its stage, and any relapses. It should include information on chemotherapy and radiation treatments (“you should know where and at what dose”), surgeries and the extent of resection, bone marrow transplants (autologous or allogeneic), any investigational treatments used, complications, and adverse reactions or allergies.
“It's very important to know what chemotherapy agents patients have received,” he said.
For example, anthracycline carries a risk for cardiac toxicity, while use of high or low doses of methotrexate or cytarabine should be noted because the particular doses of these agents significantly affect the risk of certain long-term complications.
The oncologist should detail the risk of relapse and the risk of secondary malignancies. Relapse and the timing of relapse are very disease specific. “If a patient comes back to you after having received treatment for Burkitt's lymphoma and they're a year out from completion of therapy, the chances are excellent that they're not going to relapse … compared with a patient with a low-grade brain tumor, for example, where it is actually relatively common for the duration of remission prior to relapse to be fairly extended,” Dr. Brown said.