New approaches in childhood cancer research and treatment begun in the 1970s have resulted in about 85 percent of children diagnosed with cancer today living five years or longer.

In the United States today, about 270,000 people are survivors of childhood cancer. The largest share of them are in their teens, 20s, and 30s, but many of them are in their 40s, 50s, and even 60s. A couple of decades ago, a group of researchers at the University of Minnesota Cancer Center were among the first in the nation to turn their attention to this growing population of people. The researchers wanted to know how these survivors were faring and about the longterm health effects of their cancer treatment as children.

The Childhood Cancer Survivor Study began at the University of Minnesota Cancer Center in 1993. Leslie Robison, Ph.D., and Ann Mertens, Ph.D., both pediatric epidemiologists, and Mark Nesbit, M.D., and Joseph Neglia, M.D., M.P.H., both pediatric hematologist-oncologists, organized the components of the study, applied to the National Cancer Institute for funding, and then led or coordinated the research work.

The foundation for the study was a 24-page, self-reported evaluation completed by childhood cancer survivors treated at the University of Minnesota and 26 other medical institutions across the country from 1970 to 1986. The goal of the study was to assemble a large and diverse group of childhood cancer survivors and to be able to use information provided by them to characterize their experiences.

"We have been able to generate specific information for doctors and other healthcare providers to use for counseling survivors about their follow-up care. We also have clear information on the effects certain treatments can have on overall health."
— Joseph Neglia, M.D., M.P.H.

"This is a landmark project that has provided a huge wealth of information," says Mertens. "It continues to be a steppingstone for future research and treatment improvements. It provides the basis for clinical research studies to evaluate and quantify the impact of cancer and its treatment on medical outcomes."

The study led to the development of national screening guidelines for physicians and other healthcare practitioners to use for providing follow-up care to survivors of childhood cancer.

"We have been able to generate specific information for doctors and other healthcare providers to use for counseling survivors about their follow-up care," says Neglia. "We also have clear information on the effects certain treatments can have on overall health."

Furthermore, the results of the study have prompted increased emphasis on patient education to encourage and help childhood cancer survivors become advocates for their own health. "The study has made it clear that we need to engage survivors to know about their cancer treatments and the risks they may have for problems later in life," says Neglia. "We can give survivors resources to better understand their risks and then put in the appropriate interventions. We also can give survivors peace of mind about health issues that are not of concern to them."

The Childhood Cancer Survivor Study has resulted in more than 50 articles published in research and medical journals, such as the Journal of the American Medical Association and Journal of the National Cancer Institute. Most recently, information gathered from survivors enrolled in the study formed the basis for an article about the incidence and severity of chronic health conditions in adult survivors of pediatric cancer published in The New England Journal of Medicine.

"We now hope to move this study forward to another level of research that would involve adult survivors and young adult survivors who were treated for childhood cancer after 1986," says Mertens. "We think this would be an opportunity to look at some of the newer approaches to childhood cancer treatment and the effects to further minimize the adverse impacts of future cancer treatments."

For more information about the Childhood Cancer Survivor Study, see the Cancer Survivorship section of the University of Minnesota Cancer Center's Web site, or contact the Cancer Information Line at ccinfo@umn.edu, 612-624-2620 or toll-free in Minnesota, Iowa, Wisconsin and the Dakotas at 1-888- CANCER MN (1-888-226-2376).

---

This article was originally published in the University of Minnesota Cancer Center 2006 Annual Report (PDF).