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Childhood Cancer Survivors Often Don't Know Details of Treatment

Only 15 percent say they have their medical records, survey says

TUESDAY, April 9, 2002 (HealthDayNews) -- A new survey of grown survivors of childhood cancer has found they often don't know enough about the nature of their diagnosis, what treatments they received, and other factors that may influence their health as they age.

In fact, only 15 percent said they had their medical records, and another 12 percent said they didn't know if they had them.

Once all but a guarantee of death, seven of 10 children diagnosed with cancer can now expect to live through their disease. However, very young patients often don't absorb the facts about their diagnosis -- either because they can't comprehend the details or because their parents try to protect them.

"Developmentally, a child has a limited capacity to understand this type of information," says Dr. Nina Kadan-Lottick, a pediatrician at the University of Minnesota and lead author of the study.

"It's hard for this person as an adult to know important details to get the right medical follow-up," adds Kadan-Lottick, whose findings appear in tomorrow's Journal of the American Medical Association.

Kadan-Lottick and her colleagues interviewed 635 men and women selected from a pool of some 14,000 Americans being tracked in a long-term look at cancer survivorship. The subjects were diagnosed with cancer between 1970 and 1986, when they were an average of 8 years old.

Of the former patients, 35 percent had had leukemia, the most common diagnosis. Other forms of cancer included tumors of the central nervous system, Hodgkin's disease, non-Hodgkin's lymphoma and four other malignancies.

The brief telephone interviews found that 72 percent of the former patients could accurately and precisely relate their original diagnosis, while 19 percent were accurate but not precise. That might mean they knew they'd had leukemia, but not what form of the blood disease.

Knowledge of medical history varied with the nature of the childhood cancer. Adults who'd had early neuroblastomas -- a common form of solid tumors in children -- and cancer in their central nervous system were much less likely than other former patients to be well informed about their diagnosis, the researchers found.

Responses were also less certain when it came to identifying specific drugs or the nature of their therapy. Many could not recall the name of the chemotherapy they took, and 30 percent of those who underwent radiation didn't remember what part of their body was treated.

Patients were least likely to have an accurate memory of their disease if they were diagnosed at a young age, if they'd been treated during a time when the standard of care was markedly different from today, and if they'd had nervous system cancers.

In general, Kadan-Lottick says, "they definitely knew their diagnosis pretty well. But they were not able to report information at a level of detail that would allow a physician to do an appropriate follow-up."

The lesson, says Kadan-Lottick, is that adult survivors of childhood cancer need to be sure that both they and their current doctors have access to their medical history. Attending a long-term, follow-up clinic may also be useful.

However, it's not clear how much these steps help, Kadan-Lottick admits.

Only 15 percent of people in the survey said they'd been given a written record of their cancer history and treatment, and 12 percent said they didn't know if they'd gotten such an account. Forty-four percent said they'd been to a clinic to follow up on their cancer, yet neither this nor the medical history seemed to affect their awareness of their former condition, the researchers found.

"We need to do further research to determine how to best educate this population," she says.

Ernest Fruge, a psychologist at the Baylor College of Medicine and Texas Children's Cancer Center in Houston, says his clinic's philosophy is this: "With the families, including the kids, the informed consent process is not just a one-time event."

Caregivers are continually reminding patients and their parents about the nature of the care they're receiving, giving them information "up to the point where it's not useful and being absorbed."

Other hospitals have different approaches.

Jeff Amond runs Outlook, a Web-based resource for childhood cancer survivors sponsored by the University of Wisconsin Children's Hospital. Amond, who has a social work degree, was diagnosed in 1979 with leukemia at the age of 5. Back then, the 28-year-old says, cancer was considered a death sentence and the information he received about his treatment was sparse.

However, at the University of Wisconsin, children considered cancer survivors -- those who've lived at least five years since their diagnosis -- are well equipped. They receive cards with their full medical history, including the nature of their disease and what drugs they took and are taking. They can then head to Outlook to check the long-term effects of those therapies.

"We try to supply information to people to make them become their own advocates for themselves," Amond says.

Although it's natural for parents to want to shield their children from the fear of cancer, Amond warns about being overly protective. His own family, for example, loved to take pictures. Yet, they all but stopped photographing him when he fell ill. The lack of images from that time is a gaping hole in the record of his childhood, he says.

Nor should parents fall into the trap of believing that children can't understand their therapy simply because they're young.

"Children are taking a much more active role in their treatments" these days, Amond says. "They now have such an active role in everything they're doing, and that really makes them aware of everything that's going on. I think that's only going to help them down the line."

What To Do

For more on childhood cancer, try Outlook. You can also find more information at Candlelighters Childhood Cancer Foundation.

The Texas Children's Cancer Center has information about the long-term effects of cancer treatment.

SOURCES: Nina S. Kadan-Lottick, M.D., M.S.P.H., instructor, department of pediatrics, University of Minnesota, Minneapolis; Ernest Fruge, Ph.D., assistant professor, pediatrics, Baylor College of Medicine, Houston; Jeff Amond, MSW, project coordinator, Outlook, University of Wisconsin Children's Hospital, Madison, Wisc.; April 10, 2002, Journal of the American Medical Association
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