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Kadan-Lottick NS, Robison LL, Gurney JG, et al. Childhood Cancer Survivors' Knowledge About Their Past Diagnosis and Treatment: Childhood Cancer Survivor Study. JAMA. 2002;287(14):1832–1839. doi:10.1001/jama.287.14.1832
Author Affiliations: Department of Pediatrics, University of Minnesota School of Medicine, Minneapolis (Drs Kadan-Lottick, Robison, Gurney, Neglia, and Mertens); Cancer Prevention Research Program, Fred Hutchinson Cancer Research Center, Seattle, Wash (Dr Yasui); St Louis Children's Hospital, St Louis, Mo (Dr Hayashi); St Jude Children's Research Hospital, Memphis, Tenn (Dr Hudson); Hospital for Sick Children, Toronto, Ontario (Dr Greenberg).
Context Adult survivors of childhood cancer are at risk for adverse effects
later in life but may have limited access to information about their diagnosis
and treatment. This knowledge is necessary to motivate them to seek medical
follow-up and to report essential history to health care professionals.
Objective To assess knowledge of adult survivors of childhood cancer about their
primary cancer diagnosis and associated therapies.
Design, Setting, and Participants Cross-sectional survey of 635 consecutive survivors (approximately 5%)
drawn from 12 156 participants 18 years or older participating in the
Childhood Cancer Survivor Study (a multiinstitutional cohort of individuals
diagnosed between January 1, 1970, and December 31,1986, at an age <21
years, who had survived 5 years from diagnosis).The survey assessed knowledge
of their cancer diagnosis and associated therapies in a 3- to 5-minute telephone
Main Outcome Measures Responses were compared with medical record data for accuracy, sensitivity,
specificity, and positive and negative predictive value.
Results Overall, 72% accurately reported their diagnosis with precision and
19% were accurate but not precise. Individuals with central nervous system
(CNS) cancer (odds ratio, 5.1; 95% confidence interval, 2.6-9.9) and neuroblastoma
(OR, 4.2; 95% CI, 1.8-9.6) were more likely not to know their cancer diagnosis.
Participants' accuracy rates for reporting their treatment history was 94%
for chemotherapy, 89% for radiation, and 93% for splenectomy. Among those
who received anthracyclines, only 30% recalled receiving daunorubicin therapy
and 52% recalled receiving doxorubicin therapy, even after prompting with
the drugs' names. Among those who received radiotherapy, 70% recalled the
site of radiotherapy. History of receiving a written medical summary, attending
a long-term follow-up clinic, and anxiety about late effects were not associated
with greater knowledge.
Conclusions Important knowledge deficits exist among adult survivors of childhood
cancer regarding basic aspects of their diagnosis and treatment. Such deficits
could impair survivors' ability to seek and receive appropriate long-term