BY HOLLI W. HAYNIE

When a child has cancer, the foremost concern is curing the disease.

Thirty-five years ago, most childhood cancer patients died, but thanks to medical advancements, upwards of 75 percent are becoming long-term survivors.

As long-term survivorship has increased, so have the risks of future health conditions for these survivors.

St. Jude Children's Research Hospital has traditionally followed its survivors through the After Completion of Therapy (ACT) program to determine what type of consequences can arise from treatment. Patients are evaluated annually at St. Jude, and after 10 cancer-free years, they become alumni.

Recently an extension was created of the ACT program and the Childhood Cancer Survivor Study (CCSS), a 26-institution study that continually tracks the health outcomes of 14,000 survivors whose cancer was found between 1970 and 1986. The new program, St. Jude Life, follows 2,500 alumni throughout their lives in an effort to fully understand the consequences of treatment. The program will also determine what interventions may minimize the severity of health complications and translate such data into current treatment methods in an effort to lower the rate of long-term consequences.

"Right now, we're going through the pilot phases and identifying individuals who qualify for the program," explained Leslie Robison, PhD, chair of the St. Jude Department of Epidemiology and Cancer Control. "We're discussing many issues to ask what (alumni) are looking for, what they need and what the barriers might be to visiting St. Jude throughout their lives.

"We have more than 4,000 (who qualify)," continued Robison, who explained only St. Jude alumni can qualify for the Life program. "We're staging one-year assessments over a three-and-a-half year period. We'll narrow it down to those patients who will be most informative of what long-term health is. That will help us identify a smaller group of 2,500 alumni to be in the Life program."

St. Jude has been part of the CCSS since the 1970s. Published in the Oct. 12, 2006 issue of The New England Journal of Medicine (NEJM) was the CCSS study reporting that adults diagnosed and treated between 1970 and 1986 are at increased risk of complications of cancer and its treatment as compared to siblings.

According to the report, compared to their siblings, adult survivors of childhood cancers were eight times as likely to have severe, life-threatening or disabling chronic conditions such as heart attacks, second cancers and severe problems with cognition. The three groups with the highest risk for long-term problems were survivors of bone tumors, tumors of the central nervous system and Hodgkin's disease. Female survivors were 50 percent more likely to report severe, life-threatening or disabling conditions than were male survivors.

The results represent a significant health issue because approximately 270,000 survivors of childhood cancer live in the United States. Robison said the high rate of health problems found among survivors in this study reflects the fact that before the early 1970s, most children with cancer did not survive. Significant advances in chemotherapy and radiation in the '70s and '80s enabled physicians to successfully treat children who became long-term survivors.

"We learned a great deal about long-term effects of cancer and cancer treatment since these earlier survivors were cured," explained Robison. "Today's therapies are based on improved understanding of the potential treatment complications of those earlier therapies. We're using information on late effects and translating it to how we treat new patients."

The difference between the CCSS and the St. Jude Life program is that the survivors from the NEJM report were already diagnosed with health problems.

"While there are many involved in survivor studies, the real strength is we're evaluating and moving forward in a way no one else is able to do," Robison explained.

In St. Jude Life, researchers will actually screen survivors and identify possible health threats while looking at where interventions can be made. For example, survivors will be educated on health behaviors and adopting healthy lifestyles that can reduce the potential risk of adverse health effects down the road.

The National Cancer Institute has funded the CCSS to expand the study criteria for patients diagnosed and treated between 1987 and 1999. This will enable the CCSS to include another 14,000 survivors, some of whom could qualify for the Life program.

"The real beauty of it is we have the CCSS and the Life program which essentially covers the largest number of (former) patients," said Robison. "We expect to see a lower rate of long-term consequences because of the translation of knowledge we're gaining from following long-term survivors."



November 2006