Cancer Survivorship All Grown Up

Ann Mertens

An adult patient walks into a doctor’s office and tells a physician about beating cancer as a kid some 10, 20, even 30 years before.

“OK, what does that mean to me?” the doctor says, unaware of new research showing that pediatric cancer survivors are often at a greater risk for breast cancer, weakening of heart muscle, or a second, new primary cancer.  The patient, also unaware, doesn’t know enough to ask for the right preventive tests.

This scenario haunts Emory epidemiologist Ann Mertens (left) and is the motivating factor behind her new project, SurvivorLink. An online database for pediatric cancer survivors and their families, SurvivorLink allows users to store medical information, learn about recommended screenings as they age, and share this and the latest evidence-based findings with their medical doctors. The project—funded by a three-year grant of more than $1 million from the federal Agency for Healthcare and Research Quality—is unlike any other existing database, according to Mertens. “Doctors can actually look at this and say, ‘OK this was the diagnosis, this is the treatment they had, and this is the recommended screening as we move forward.’ In essence, we’re putting an infrastructure in place so we can educate the primary care physician as well.”

SurvivorLink promises to bridge the gap of information that exists between researchers and practitioners, patients and physicians. It can even be a much-needed resource for an adult who may have a hazy memory of a childhood radiation treatment. “For example, a 15-year-old might not necessarily be interested in possible infertility because of their cancer treatment,” Mertens says, “but when you’re 22 or 24, or maybe thinking about being married, all of a sudden that becomes important.

The SurvivorLink pilot began in September with recruitment of 500 pediatric cancer survivors in Georgia under the age of 21. Over the next six months, Mertens will track their use of SurvivorLink to see if they are learning more about their cancer treatment and long-term health as well as to solicit feedback from their doctors.

At the end of the pilot phase, Mertens will use patient and physician input to enhance the website before making SurvivorLink available to all of Georgia’s pediatric cancer survivors—no matter how old. After all, there’s another scenario Mertens would like to make a reality. “When the patient and parent come in the door and the parent says, ‘My son needs an echocardiogram,’ the physician can say ‘Oh, you’re right. You know what, I just looked on this website, and it explains to me why he needs it, how often he needs it, and the treatment he had that would cause me to look for this.’”

This way, Mertens says, cancer survivors can bridge their past to a future that doesn’t just extend life longer but is happier and healthier. —Dana Goldman

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