Knowledge deficits exist among adult survivors of childhood cancer about basic aspects of their diagnosis and treatment, which could impair their ability to receive long-term follow-up care, according to an article in the April 10 issue of The Journal of the American Medical Association (JAMA).
Nina S. Kadan-Lottick, M.D., M.S.P.H., of the University of Minnesota School of Medicine, Minneapolis, and colleagues at the University's Cancer Center conducted a telephone survey of 635 survivors drawn from 12,156 participants who are 18 years or older in the Childhood Cancer Survivor Study (CCSS). The CCSS is a multi-institutional study of individuals at 25 clinical centers who have survived at least five years after diagnosis of a cancer. The participants were originally diagnosed between January 1, 1970 and December 31, 1986. The average age of study participants was 29 years, and their average age at the time of their cancer diagnosis was approximately 8 years old.
The researchers wanted to find out how much adult survivors of childhood cancers knew about their diagnosis and treatment. The 3-5 minute telephone survey assessed knowledge of cancer diagnosis and associated therapies. The responses were then 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. The researchers asked respondents to provide a detailed name of the cancer, precise name of the chemotherapy and the site of any radiation therapy.
"Individuals with central nervous system cancer and neuroblastoma [tumor of the adrenal glands or nervous system] were more likely not to know their cancer diagnosis," they write. "Among those who received anthracyclines [chemotherapy medications used to treat a variety of childhood cancers], only 30 percent recalled receiving daunorubicin therapy [chemotherapy that is given as a treatment for some types of cancer] and 52 percent recalled receiving doxorubicin therapy [another type of chemotherapy], 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 pertaining to their malignancy at the time of their 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'." The researchers say the survivors may be unable to recall relevant information about their cancer medical history because their parents most likely made all the medical decisions.
According to background information in the article, childhood cancer rates have improved dramatically over the past several decades. The five-year survival rate now stands at 70 percent. The researchers say the improved survival rates present another set of concerns as the survivor population is now at risk later in life 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, the authors note. "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 that adult survivors of childhood cancers obtain their medical records from the institutions that treated them prior to formulating a long-term follow-up care plan, whenever possible. They noted that only 15 percent of the respondents had ever received a written list of their disease diagnoses and treatment to keep as a reference for the future.
SOURCES:
Journal of the American Medical Association, April 10, 2002; 287:1832 - 1839
University of Minnesota Cancer Center (http://www.cancer.umn.edu)
