Childhood Survivors May Not Know Their Past Rx

NIAGARA-ON-THE-LAKE, 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 health."

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 cancer.

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 diagnosis—inaccurate 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 history.

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.

Some patients over-reported their treatment: 10% said that they received chemotherapy and radiation when they had not. Regular follow-up in a clinic or previous receipt of a written summary did not seem to help with recall.

"These data show that physicians must rely on the medical record and not patient reports when determining appropriate follow-up care and screening. Only 35% of the cohort believed they were at risk for an adverse effect related to their previous cancer diagnosis," Dr. Kadan-Lottick said. She urged the development of a better survivor education process to help this population assess their risks for later complications.