Circle of Life
St. Jude studies survivors to improve their quality of life and treatment for new patients.
photograph courtesy St. Jude
St. Jude Children’s Research Hospital is known worldwide for its exceptional care for childhood cancer patients and their families. But what some don’t realize is that’s just the starting line. Once patients are healed and become survivors, they receive extensive follow-up for preventative measures as well as to provide better treatment for the next generation of cancer patients. Three dedicated branches of childhood cancer survivorship at St. Jude include the After Completion of Therapy Clinic (ACT), the Childhood Cancer Survivor Study, and the LIFE study programs.
ACT Clinic, the centerpiece of St. Jude’s efforts, is for patients who have been in remission for at least two years, and it requires annual evaluations until age 18, or 10 years after diagnosis, whichever comes later. It’s the largest long-term follow-up clinic for pediatric cancer patients in the U.S. The Childhood Cancer Survivor Study (CCSS) is for broader research into survivorship in which St. Jude, in conjunction with the National Cancer Institute, collects data from more than 20,000 survivors to advance the body of knowledge of long-term effects and chronic diseases. Finally, the St. Jude LIFE study compiles detailed health data on long-term survivors in a clinical setting.
Dr. Les Robison, chair of the Epidemiology and Cancer Control Department and associate director for the Cancer Center in cancer prevention and control, acted as an advisor to St. Jude for years before he was recruited specifically to head the research department. “What we’re really interested in is how we study and follow long-term survivors,” says Robison. “Since St. Jude focuses on children, what we have really built here is a very strong emphasis on cancer survivors.” He states that the percentage of survivors continues to grow, with many being cured completely. By the end of 2013 there will be an estimated 400,000 survivors of childhood cancer in the United States.
When Robison moved to Memphis he brought with him the idea for what has become the St. Jude LIFE Study. “Nobody else in the world is able to follow these survivors clinically for the rest of their lives,” says Robison. “What makes St. Jude LIFE so unique is that we can actually see the patients, screen them, and hopefully identify adverse or chronic health conditions before they actually become clinically apparent.”
The hope for the LIFE study, and survivor research as a whole, is multifaceted and includes benefits for adult survivors as well as the next generation of children diagnosed with cancer. “There’s a circle,” explains Robison. “Patients are diagnosed, treated, and become survivors. What we’ve been doing for the last 10 to 20 years is collecting information about what the risks are that survivors experience and who’s at the highest risk. Some of that goes directly back into developing recommendations for screenings to impact the quality of health for survivors. But then, we’re also taking those observations and developing ways to intervene and prevent side effects [for when we can’t change the treatment]. It all goes back to how we change the treatment for newly diagnosed patients and improve quality of life for survivors.”
These improvements include aspects the science of living longer to an improved quality of life. For example, Robison explains, if the treatment that saves you also disfigures you, that’s not good quality of life and needs to be fixed. With the LIFE study, those that are at risk are given a full work up that usually lasts several days and includes screenings for potential high-risk diseases. As you might expect, all of the costs for the visit, including lodging and meals, are taken care of by the hospital.
As far as the future is concerned, Robison says, “The circle is always changing. As we find out new information, how new patients are being treated is evolving, and [treatment] is very different than it was 20 years ago for the same condition. We’re going to continually have to keep studying the new survivors. As new drugs come in we’re going to have to make sure we follow those new patients to understand the risks. In many ways, this is a never-ending area of research that is necessary and has to be carried out. Now we’re also getting into the genetic features that will predict who’s going to have late effects.”
Part of the future is to try have a better way to predict who will be high risk based on clinical research, genetic testing, and treatment diagnostics, and St. Jude is at the forefront.