Guidelines for following pediatric cancer survivors aim to reduce medical complications

December 20, 2004

New guidelines established by national experts hold the promise of reducing illness and death among adult survivors of childhood cancers. These guidelines, published by a team co-led by a St. Jude Children's Research Hospital investigator, are published in the Dec. 15 issue of the Journal of Clinical Oncology (JCO).

While not designed to replace the clinical judgment of physicians, the guidelines provide recommendations for screening and management of late effects that may arise in pediatric cancer survivors years after their chemotherapy, radiation or surgical treatments. The guidelines are intended to establish national standards to help physicians promote healthy lifestyles among these patients, provide for ongoing monitoring of their health, facilitate early identification of late effects of therapy and provide timely medical care for those late effects.

An estimated 270,000 survivors of childhood cancer live in the United States. An estimated one in 570 young adults age 20 to 34 is a childhood cancer survivor, according to Melissa M. Hudson, M.D., member of St. Jude Hematology-Oncology and director of the St. Jude After Completion of Therapy (ACT) clinic. She is senior author of the JCO report.

Hudson co-chaired the seven-member task force that established the guidelines with Wendy Landier, R.N., C.P.N.P. (City of Hope Comprehensive Cancer Center, Duarte, Calif.). The task force was supported by a national panel of experts and reviewers from the Children's Oncology Group (COG) Late Effects Committee, COG Nursing Discipline section and the COG Patient Advocacy Committee. The guidelines and related health links are available at www.survivorshipguidelines.org. COG is a consortium of about 240 medical research institutions collaborating to study pediatric cancers and develop cures for these diseases. The group includes more than 4,000 investigators and conducts cooperative clinical trials nationwide.

"The development of cures for most pediatric cancers has produced a growing population of childhood cancer survivors who are at increased risk for health problems caused by the therapies they underwent as children," Hudson said. "The needs of these individuals have not been optimally addressed in the present health care environment. Late treatment effects occur in the majority of survivors but are severe and life-threatening in as many as 25 percent of adult survivors of childhood cancer. Anticipating potential complications provides the opportunity to improve the survivor's quality of life through preventive or corrective interventions."

The report authors anticipate that widespread use of the guidelines will help researchers determine the efficacy and cost effectiveness of screening survivors of childhood cancers to reduce medical complications and death. The guidelines are based on a thorough review of the literature in research, medical and nursing journals, coupled with the extensive collective clinical experience of the task force. A panel of experts and a multidisciplinary review panel together comprise dozens of physicians, nurses, researches, behavioral specialists and patient/parent advocates from around the country.

The long-term follow-up guidelines are composed, in part, of charts listing therapeutic agents; potential late problems they might cause; risk factors making long-term complications more likely; factors that put people at highest risk; and suggestions on both how often patients in each category should be evaluated and what sort of counseling and medical interventions should be offered to them.

The guidelines also include information sheets on a variety of subjects related to adult survivors of childhood cancer. Topics include emotional issues, finding appropriate health care after cancer, health promotion through diet and physical activity and health issues after childhood cancer. Specific medical issues such as eye problems, liver and bone health, hepatitis and the risk of second cancers are also addressed. As new information becomes available it will be used to update the guidelines.

"Our goal was to bring together in one place the collective information and wisdom that has been published or is part of the experience of the people who helped to develop these guidelines," Hudson said.

Other authors of the report are Smita Bhatia (City of Hope Comprehensive Cancer Center; Duarte, CA); Debra A. Eshelman (Children's Medical Center; Dallas); Katherine J. Forte (Children's Healthcare of Atlanta); Joan Darling (COG Patient Advocacy Committee, Lincoln, Neb.); F. Daniel Armstrong (University of Miami School of Medicine); Julie Blatt (University of North Carolina, Chapel Hill, N.C.); Louis S. Constine (University of Rochester Medical Center, Rochester, N.Y.); Carolyn R. Freeman (McGill University Health Centre, Montréal); Debra L. Friedman (Children's Hospital and Regional Medical Center (Seattle); Daniel M. Green (Roswell Park Cancer Institute, Buffalo, N.Y.); Neyssa Marina (Stanford University Medical Center, Stanford, Calif); Anna T. Meadows (Children's Hospital of Philadelphia); Joseph P. Neglia (University of Minnesota School of Medicine, Minneapolis); Kevin C. Oeffinger (University of Texas Southwestern Medical School, Dallas); Leslie L. Robison (University of Minnesota Cancer Center, Minneapolis); Kathleen S. Ruccione (Children's Hospital of Los Angeles); Charles A. Sklar (Memorial Sloan Kettering Cancer Center, New York).

This work was supported in part by COG, a Cancer Center Support (CORE) grant from the National Cancer Institute and ALSAC.
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St. Jude Children's Research Hospital

St. Jude Children's Research Hospital is internationally recognized for its pioneering work in finding cures and saving children with cancer and other catastrophic diseases. Founded by late entertainer Danny Thomas and based in Memphis, Tenn., St. Jude freely shares its discoveries with scientific and medical communities around the world. No family ever pays for treatments not covered by insurance, and families without insurance are never asked to pay. St. Jude is financially supported by ALSAC, its fundraising organization. For more information, please visit www.stjude.org.

St. Jude Children's Research Hospital

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