CHICAGO (EGMN) – Childhood cancer and its associated therapy affect virtually all organ systems, and can lead to an array of second cancers and late effects. And yet, up to 85% of medical oncologists surveyed in a cross-sectional study were unable to make appropriate recommendations on therapy for survivors of childhood cancer, as outlined in guidelines from the Children’s Oncology Group.
“These patients are getting really bad health problems early, and they’re dying early,” said the study’s principal investigator, Dr. Tara O. Henderson of the University of Chicago. “This population doesn’t know it has these problems, and we think many of the doctors aren’t aware of the degree of their health risks, or of the appropriate guidelines.”
Results of this study of physician preferences and knowledge gaps in the care of childhood cancer survivors were presented in a poster at the annual meeting of the American Society of Clinical Oncology.
Adult survivors of childhood cancer are a growing population, currently estimated at more than 300,000 by the U.S. National Cancer Institute’s Office of Cancer Survivorship. Guidelines for long-term follow-up care are provided by organizations such as the Children’s Oncology Group (COG), an association of institutes dedicated to research in pediatric oncology.
However, evidence indicates that only a minority of survivors actually receive appropriate risk-based health care (Ann. Fam. Med. 2004;2:61-70; J. Clin. Oncol. 2008;26:4401-9). Physicians’ lack of knowledge is one culprit, and another is confusion over who should provide the care.
“It probably should be a joint venture between the cancer center and the primary care doctor,” said Dr. Henderson, director of the childhood cancer survivors center at Comer Children’s Hospital in Chicago. “It needs to be a combined, very open venture.”
Pediatric oncologists in the United States are not comfortable caring for survivors older than age 21, (J. Clin. Oncol. 2010;28:878-83), and many are not aware of appropriate surveillance recommendations, according to the poster.
This study examined medical oncologists’ knowledge of and attitudes about long-term follow-up care of survivors of childhood cancer. It included the case of a 26-year-old female survivor of Hodgkin’s lymphoma who was treated at age 16 with combination chemotherapy (including 150 mg/m2 doxorubicin and 15g/m2 cumulative cyclophosphamide), and 25 Gy mantle radiation.
Among the responding physicians, 85% did not appropriately recommend cardiac surveillance, 55% did not appropriately recommend yearly thyroid surveillance, 45% did not appropriately recommend yearly breast cancer surveillance, and only 5% answered all three questions appropriately. The questions were based on COG long-term follow-up guidelines.
Surveys were mailed together with a $5 gift card to 1,249 U.S. medical oncologists who had been systematically selected from the 2009 ASCO directory. Of the 497 surveys returned, almost half (47%) were from physicians in private practice, followed by those in academic medical centers (32%) and in cancer centers (17%). Their median time in practice was 20 years, and 35% reported training in evaluating and managing young and adolescent cancer survivors.
Regarding long-term care, a little more than half (53%) said that they would be willing to follow childhood cancer survivors in the absence of a more suitable physician, whereas 36% preferred to follow them as long as possible. Almost 60% (59%) thought that long-term follow-up care should be managed by a medical oncologist, whereas 31% thought it should be managed by the primary care physician.
“Long term, we need to make sure that the primary care doctors feel comfortable with this patient population,” said Dr. Henderson.
The responding oncologists were asked a number of questions on a 7-point Likert scale, including whether they were familiar with guidelines for long-term follow-up care. The average response was 4.0, indicating that respondents were only “somewhat familiar” with the guidelines.
The study concluded that medical oncologists express a wide range of preferences, and many are uncomfortable with the care of childhood cancer survivors younger than a certain age. Many also appear to be unfamiliar with the COG guidelines. Familiarity increased the comfort level in caring for younger survivors.
“Once they’re cured of their cancer, we have to figure out who is the best doctor to be taking care of these patients,” said Dr. Henderson.
Dr. Henderson disclosed no relevant financial relationships. The work was supported by a grant from the NIH.