Nina S. Kadan-Lottick, M.D., M.S.P.H., and her American colleagues conducted a telephone survey of 635 survivors drawn from 12,156 participants in the Childhood Cancer Survivor Study, a multi-center project involving individuals who have survived at least five years after diagnosis. The 635 survey participants were originally diagnosed between January 1, 1970 and December 31, 1986. Their average age was 29 years, and their average age at time of cancer diagnosis was approximately 8 years old.

The 3-5 minute telephone survey assessed knowledge of cancer diagnosis and associated therapies. The researchers asked respondents to provide a detailed name of the cancer, precise name of the chemotherapy, and the site of any radiation therapy. The responses were compared with medical record data for accuracy.

"Overall, 72 percent accurately reported their diagnosis with precision and 19 percent were accurate, but not precise," the researchers report.

"Individuals with central nervous system cancer and neuroblastoma were more likely not to know their cancer diagnosis," they write." Among those who received anthracyclines, only 30 percent recalled receiving daunorubicin therapy, and 52 percent recalled receiving doxorubicin therapy, even after prompting with the drugs' names. Among those who received radiotherapy, 70 percent recalled the site of radiotherapy."

The researchers say childhood cancer survivors probably had limited access to information at the time of diagnosis and treatment. "They may have been too young to understand explanations, " and "their parents may have decided to shield them from details of their disease, including terms such as cancer and chemotherapy."

According to background information in the article, childhood cancer rates have improved dramatically over the past several decades. The five-year overall survival rate now stands at 70 percent. The researchers assert that improved survival rates present another set of concerns as the aging survivor population is now at risk for adverse effects related to their cancer, including the possibility of more tumors, organ dysfunction, early death, endocrine abnormalities, and cognitive and behavioral deficits. Adverse effects related to the therapies used to treat the cancers, such as chemotherapy and radiation therapy, may also require long-term follow-up care.

"In our study, only one third of respondents believed that treatment for a previous childhood malignancy could cause serious health problems as they grew older." The authors recommend steps to help adult survivors of childhood cancers with their lifelong medical care. Medical records should be obtained from the treating institution prior to formulating a long-term follow-up care plan, whenever possible. Treatment summaries must be given to patients in an accessible form, even many years later. The authors suggest that a secure electronic record may be an option. In addition, survivors should be better educated about their medical history to be motivated to pursue appropriate follow-up care.

The authors report that only 15 percent of the survey participants had ever received a written list of their disease diagnoses and treatment to keep as a reference.