More Childhood Cancer Survivors Need Long-Term Follow-Up Care

June 3, 2007

Results of a new study show that the majority of survivors of childhood cancer do not receive specialized long-term medical care, even though they are known to be at high risk for long-term health problems.

Previous studies have found that approximately two-thirds of childhood cancer survivors develop at least one chronic health condition because of their cancer or cancer treatment. These health conditions include secondary cancers, heart problems, lung disease, stroke, and premature menopause. This is the first study to look in detail at how childhood cancer survivors access health care.

In this study, 8,552 members of the Childhood Cancer Survivor Study (CCSS) completed a questionnaire about the health care they received within the last two years. The CCSS is a research program sponsored by the National Cancer Institute that follows people who survived at least five years after being diagnosed with cancer between 1970 and 1986. On average, the participants were seven years old when they were diagnosed with cancer and 31 years old when they were surveyed. Health-care experience in the study was classified as general care, cancer-related care (medical care directly related to a previous cancer diagnosis and treatment), risk-based care (medical care that addressed the risks faced by all cancer survivors), and optimal risk-based, cancer-related care (medical care to manage the long-term health risks of cancer and its treatment before the risks become serious health problems). A subgroup of risk-based cancer-related care was defined for patients at high risk for breast cancer (those who received radiation therapy to the chest and were older than 27) or heart problems (those who received high doses of a class of drugs called anthracyclines, such as doxorubicin [Adriamycin, Rubex], or an anthracycline plus radiation therapy to the chest).

Of those surveyed, 88% had received medical care of any kind in the previous two years, 14% reported receiving cancer-related care, and 18% said they received risk-based care. Among patients at increased risk for breast cancer or heart problems, 49% reported having received a mammogram (an x-ray of the breast), and 28% reported having received an echocardiogram (a test that uses sound waves to evaluate the heart). Current guidelines recommend that all cancer survivors at risk for breast cancer have a mammogram every year starting at age 25 and those at risk for heart disease have an echocardiogram every one to two years.

"We were disappointed by these findings," said Paul Nathan, MD, a staff oncologist at the Hospital for Sick Children in Toronto, Canada, and the study's lead author. "Breast cancer and heart problems are conditions that, while not entirely preventable, are treatable if they are picked up early. But we found that the majority of patients are not getting the tests they need to be diagnosed in a timely manner."

What This Means for Patients

It is important for all survivors of childhood cancer to be aware of their increased health risks, such as heart problems and second cancers. Survivors should tell their primary care doctors that they have been treated for cancer, and, if possible, have a record of the drugs and doses of chemotherapy and radiation therapy used. The Children's Oncology Group published long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers at www.survivorshipguidelines.org.