Ontario, Canada"Adequate knowledge of a cancer diagnosis and treatment
is necessary in order to offer appropriate follow-up to cancer survivors,"
Nina Kadan-Lottick, MD, said at the 7th International Conference for Long-Term
Complications of Treatment of Children and Adolescents for Cancer (abstract
22), hosted by Roswell Park Cancer Institute.
However, she noted, many childhood survivors may not
accurately recall their diagnosis and treatment. "They may have been too
young to understand what was happening, or they may have been shielded by their
parents or caregivers," she said. "We need to know if these former
patients are aware of how their childhood illness may impact their future
Her research team, from the Department of Pediatrics,
University of Minnesota, Minneapolis, conducted a cross-sectional survey of 635
individuals drawn from 11,984 participants in the Childhood Cancer Survivor
Study (CCSS). The CCSS is a resource designed to investigate the long-term
effects of cancer treatment among 5-year survivors of childhood and adolescent
The average age at diagnosis was 7.9 years, and the average
age at the time of the survey was 29.3 years. A brief phone interview was
completed with participants to assess their knowledge of their diagnosis and
treatment. Responses were compared with the patients’ medical records.
More than 72% of those surveyed accurately reported their
diagnosis in detail, such as knowing they had leukemia and that the subtype was
acute lymphoblastic leukemia. Another 20% knew their basic diagnosis without
details, eg, knowing they had some type of leukemia. Survivors of central
nervous system cancers and neuroblastoma were more likely not to know their
diagnosisinaccurate response rates were 24% and 21%, respectively, for
patients with these cancers.
Regarding treatment, 94% knew if they had received
chemotherapy and 89% knew if they had received radiation therapy. However, 30%
of individuals who received radiation therapy did not know the site(s)
affected; 67% of patients who underwent splenectomy could not report this
Many patients treated with anthra-cycline-containing
regimens did not know the names of the drugs they had received. "Only 30%
recalled receiving daunorubicin therapy and 52% recalled doxorubicin therapy
even when prompted with the drug names," she said.