Survivors Lack Knowledge of Their Childhood Cancer
Originally published by Reuters, April 9, 2002
NEW YORK (Reuters Health) — Many adults who have survived a childhood cancer lack a clear understanding of their past diagnosis and treatment, putting them at risk for potentially serious health complications in the future, researchers report.
Improved survival rates for childhood cancers may translate into later health problems related to cancer and treatment including additional tumors, organ dysfunction, hormonal imbalances and early death.
But according to the report in the April 10th issue of The Journal of the American Medical Association, about one third of 635 childhood cancer survivors interviewed believed that their treatment could cause serious health problems as they aged.
Many adults could not give a detailed name of their cancer, recall which chemotherapy agents were used, or remember the site of their radiation therapy. Adults who had been diagnosed with cancers affecting their central nervous system were five times less likely to know their diagnosis. Similarly, patients who were diagnosed with cancer at a younger age and had survived a cancer of the central nervous system were less likely to know their chemotherapy history.
About 10% of those who had never received chemotherapy told researchers that they had, and 8% said they did not know whether they had ever received radiation therapy. Individuals who received their cancer diagnosis at a younger age and those with less education were less likely to know their radiation history.
"Such deficits could impair survivors' ability to seek and receive appropriate long-term follow-up care," Dr. Nina S. Kadan-Lottick from the University of Minnesota in Minneapolis and colleagues conclude.
Radiation therapy, for instance, is associated with health risks that depend on the site of treatment. Women who have had radiation therapy to their chest require "earlier and more frequent mammograms," the researchers point out.
In the study, individuals were asked to recall the name of their childhood illness and to describe their treatment. They were also asked to recall the names of any chemotherapy agents, the subtype of cancer and the specific surgical procedures used. Responses were compared with data from medical records.
While children with cancer may be shielded from detailed information or may be too young to understand their treatment and participate in medical decisions, the authors note, patients should learn these details as adults in order to make well-informed medical decisions.
The researchers recommend that doctors treating childhood cancer patients provide a summary of treatment and that patients receive a medical record from the hospital whenever possible. In the study, only 15% of patients had received a written report of their diagnosis and treatment to use as a future reference.
"Medical care providers must recognize that much of a patient's history, even with probing questions, cannot be trusted to guide medical management," Kadan-Lottick and colleagues conclude.
