Source: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
:
1832
–1839.

To assess knowledge of adult survivors of childhood cancer about their diagnoses and treatments, these investigators from a consortium of hospitals performed a cross-sectional survey of 635 survivors, with responses compared to medical record data. The participants represented approximately 5% of the overall number enrolled in the Childhood Cancer Survivor Study; all were diagnosed at age <21 between 1970 and 1986. Overall, 72% of the participants reported their diagnosis accurately with precision, and an additional 19% were accurate but not precise (ie, reporting “lymphoma” but not Hodgkin disease or Non-Hodgkin lymphoma). Those with a history of Hodgkin disease were most likely to know their diagnosis (83/86=97%). Those least likely to report an accurate diagnosis with detail were survivors of neuroblastoma (36/47=77%) and central nervous system (CNS) cancers (28/82=34%).

Knowledge of treatment was also variable. Accuracy of the study participants in reporting their treatment history was 94% for chemotherapy, 89% for radiation, and 93% for splenectomy. Ignorance about the specifics of one’s chemotherapy history was associated with a diagnosis during an earlier treatment era (1970–1977 versus 1978–1986), diagnosis before age 5, and a history of CNS cancer. Of those who received anthracyclines, fewer than half recalled which drug they received. For those receiving radiation therapy, only 70% could identify the site receiving radiation. Most importantly, only 35% of respondents were aware that past therapies could cause serious health problems in the future.

Childhood cancer cure rates have dramatically increased, with overall 5-year survival rates currently exceeding 70%. As children surviving cancer grow into adulthood, they remain at risk for delayed adverse effects related to their malignancy and subsequent therapy. Late effects of treatment among adult survivors of childhood cancers have been well-documented1 and include second neoplasms, organ dysfunction, early death, endocrine abnormalities, and neuropsychological dysfunction (see also

AAP Grand Rounds
, October
2001
;
6
:
40
–41
) and adequate follow-up is not always assured. Accurate information about the diagnosis and treatment of the prior malignancy is essential, especially if these patients’ health care is transferred from pediatric to adult systems.2 However, children often have limited information about their disease due to young age and parental protection. A recent study showed that half of long-term survivors had not been seen by a physician for evaluation of cancer-related problems in 2 years.3 Even with planned transition programs, which include both pediatric oncologists and adult care providers, this care is often fragmented. Only 8% of such transitional programs involve primary care physicians.3 

Traditional ways to provide information to childhood cancer survivors include the use of a written summary and care through a special, long-term follow-up clinic. An interesting finding in the current study is that these methods did not have an effect on whether or not patients were able to report their history accurately. However, only 15% of...

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