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Back to the Future: Few Survivors of Childhood Cancer Know Their Medical History

Many adult survivors of childhood cancer lack basic knowledge of their earlier diagnosis and treatment.

An increasing number of survivors of childhood cancer are living into adulthood at risk for long-term secondary medical complications. To examine adults' knowledge of their childhood cancer, researchers asked 635 adults enrolled in the Childhood Cancer Survivor Study about their diagnosis and the therapies they received.

Nine percent of participants did not know their childhood cancer diagnosis. Factors associated with lack of knowledge were young age at diagnosis, male sex, diagnosis of brain tumor, and diagnosis of neuroblastoma. As many as 94% of participants knew they had received chemotherapy; however, only 8% who received doxorubicin and 33% who received daunorubicin knew that they were given these potentially cardiotoxic drugs. In all, 89% of survivors correctly reported whether they had received radiotherapy, but only 70% correctly identified the site of radiation. Surprisingly, just 75% of subjects with previous splenectomy knew (without prompting) that they had lost a spleen. Those who attended a long-term follow-up clinic did not have greater knowledge than other survivors.

Comment: As childhood cancer survivors graduate out of our pediatric practices, we must be sure to arm them with knowledge of the potential effects of their past therapy, especially patients who have had brain tumors or cancer early in life. A guide to help parents communicate with children about their cancer appears in the same issue.

— F. Bruder Stapleton, MD

Published in Journal Watch Pediatrics and Adolescent Medicine May 13, 2002

Citation(s):

Kadan-Lottick NS et al. Childhood cancer survivors' knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA 2002 Apr 10; 287:1832-9.

• Original article (Subscription may be required)
• Medline abstract (Free)

Stevens LM. JAMA patient page. Cancer and children. JAMA 2002 Apr 10; 287:1890.

• Medline abstract (Free)

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