Doctors at Baylor College of Medicine are leading the way in treating and researching childhood cancer at the Texas Children's Cancer Center but the center has also become nationally known for its work in an increasingly important area of pediatric cancer – survivorship issues.

"At the Texas Children's Cancer Center we recognize that health concerns for childhood cancer patients do not end when their cancer treatment is successfully completed," said Dr. ZoAnn Dreyer, associate professor of pediatrics – hematology/oncology at BCM and director of the Long-Term Survivor Program at the cancer center.

More than 75 percent of pediatric cancer patients are cured but many of these survivors suffer late effects of their treatment, which can be potentially serious, Dreyer said. Some late effects include infertility, secondary malignancies and heart disease.

Long-term Survivor Program

Survivors are eligible for the Long-Term Survivor Program at Texas Children's Cancer Center once they have been off treatment for two years and are typically four to five years post diagnosis. Currently there are about 1,300 patients in the program, including children and adults alike. Survivors followed range in age from 6 to 46 years.

Patients' initial visit includes a comprehensive evaluation of their physical health as well as academic and social development. It also includes a meeting with a social worker who can help assess coping skills, answer financial and insurance concerns and provide the appropriate resources if needed.

Wealth of post-treatment information

The Long-Term Survivor Program also provides basic patient education about diagnosis, treatment, potential late-effects and maintaining and maximizing good health in regards to diet, exercise, environmental exposure, and stress. There are also opportunities to be enrolled in clinical research trials.

These trials are a significant part of the Long-Term Survivor Clinic, Dreyer said. They research such import survivorship issues such as the vocational and employment experiences of long-term survivors. Other trials seek to identify genetic and clinical markers that predict health issues such as development of heart damage and infertility in long-term pediatric cancer survivors.

"Trials are an important part of the Long-Term Survivorship Program," Dreyer said. "For example, some of our research trials are designed to identify genetic variations that may help predict which patients are at greatest risk for late effects. Using that information we can then intervene in newly diagnosed patients and potentially prevent these complications."

Passport for Care

Now members of the Long-term Survivorship Program also have access to an innovative web-based initiative called Passport for Care, that will help guide their health care needs.

The Passport for Care, developed at Texas Children's Cancer Center in conjunction with Baylor's Center for Collaborative and Interactive Technologies, is a web site that allows oncologists to enter a survivor's basic medical history—the type of cancer that person had and how he or she was treated, including any chemotherapy, radiation or surgery. With the click of a mouse, the Passport for Care computer algorithm generates individualized health care recommendations based on the most up-to-date survivorship guidelines.

"This makes it as swift as the click on your mouse to get the information you need," said Dreyer. "It really allows any physician to become something of a 'survivor expert.' It allows survivors who are unable to come here for annual checkups to get appropriate care. It is also a huge time saver for the physician, and for the patient it can be a life saver."

Passport for Care also includes a research component that will seek to determine whether the use of the program increases the quality of care that survivors receive.