Counting on Winning

Setting Sites on Pediatric Cancer Survivorship

Dr. Ann Mertens knows that the hope of pediatric cancer patients is in the numbers.

Mortality rates have fallen by more than 20 percent for many cancers in the past three decades. The five-year survival rate for all cancers has risen to more than 80 percent from less than 50 percent in the 1970s.

And in a recent survey conducted by her research team, more than 90 percent of pediatric cancer survivors reported that they were in “very good” or “excellent” health.

“I think that speaks to the resilience of kids,” said Mertens, an epidemiologist by training and the Director of the Clinical Research Office in Pediatric Hematology/Oncology at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta. “They deal with it, and they move on.”

Mertens, who has authored or co-authored almost 250 publications and research conference abstracts, has been tracking “these kids” for decades. But in recent years, as she reviewed her research data, she realized that the patients still have critical needs often missed or ignored by the medical field as they move toward adulthood.

“We used to throw everything but the kitchen sink to cure them, to keep them alive,” she said. “But we’ve learned we can’t do that. We need to find ways to have a great survival rates, but also maintain a better quality of life that speaks well of the whole ‘bench to bedside’ process.”

To promote this emerging field of cancer survivorship, this world-class expert joined the Aflac Cancer Center in 2007 to build one of the largest pediatric cancer survivorship programs in the country. And unlike many programs, this effort is designed to not only provide long-term scientific data of pediatric cancer survivors, but help patients and their doctors overcome challenges that might occur decades down the road.

“They’re at risk for all sorts of complications,” she said. “And so the question became how do we help them as they progress through life?”

Mertens’s query is a good one—and CURE Childhood Cancer has awarded Mertens’s team a new grant to study this critical issue of “medical transition” from acute cancer treatment to cancer survivorship. Specifically, her team will be looking at the challenges facing young adults who are “particularly challenging.”

“As they transition from high school, these adolescent/young adults will diverge in their life path moving forward,” she wrote in her grant proposal. “Some will continue to live at home, some will get jobs, and some will go off to college. Each path requires different focus to engage these young adults in their health care moving forward.”

Mertens’s own career in cancer moved forward because of the serendipity of a number of factors—including Children’s having the largest volume of patients (critical for researchers), Atlanta being a thriving philanthropic community and her own long work history with pediatric oncology legend, William G. Woods, M.D., the Aflac Cancer Center’s Pediatric Hematology/Oncology Director and the Daniel P. Amos Children’s Chair.

And now that she’s here, she’s able to devise and direct research projects that can help this “unique and complicated” population. From nuts-and-bolts administrative issues, like keeping their paperwork and records in order, to finding doctors who can recognize their specialized concerns as they become adults, this population faces a host of issues not covered at the final discharge.

“What I’ve really become interested in is how to educate survivors, and their parents, on what the journey might look like,” she said. “And specifically, at what point do you tell information related to that journey.”

Tell them too early in the process, and doctors and researchers are likely to scare them about the long-term effects. Tell them too late, and conditions—like heart problems—related to their cancer could be missed.

In addition, researchers are concerned that many providers, from primary care physicians to specialists, do not have the training to deal with such a complicated case who might arrive in their office.

“Very few medical schools deal in any substantial way with cancer survivorship,” Mertens said. “It is such a new field—we are trying to intervene and help providers navigate this care.”

Mertens is looking at telemedicine as a potential solution for many survivorship issues. With help of another CURE grant, she hopes to determine the effectiveness of telemedicine visits on cancer survivors who live more than a short drive away from the hospital or lack proper transportation.

She believes that telemedicine could be the answer to improving access to care for those hard-to-reach patients.

To aid in the research, Mertens and her team have created–with the help of a three-year grant of more than $1 million from the federal Agency for Healthcare and Research Quality–SurvivorLink, a new website and database, cancersurvivorlink.org, that engages patients and providers with separate portals that address each category’s key concerns. The provider portal was launched in 2009, and the patient portal was launched in 2010.

“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,’” she said in a recent Emory University interview. “In essence, we’re putting an infrastructure in place so we can educate the primary care physician as well.”

In addition, it allows patients to store their records and information, with special privacy settings that allow them to select exactly who has access to the documents. It also fosters a long-term treatment plan that goes far beyond the initial chemo and radiation care.

Mertens is working on this in coordination of a statewide initiative, which includes four other pediatric centers in Columbus, Savannah, Macon and Augusta. (In 2007, Mertens was selected by the Georgia Cancer Coalition as a scholar to the Distinguished Cancer Clinicians and Scientists program within the state).

At first, the project hit an obstacle with patients over concerns of security, she said. But once parents felt comfortable that their children’s information would be kept safe, they started to embrace the concept.

“Once we got their attention and we could explain the purpose, everybody was like, ‘I need this and I need it now, and I need it bad.’ Once we made the connection, they became very interested.”

And now, armed with both this portal and an increasing amount of data, Mertens said she and her research teams can start asking key questions about how pediatric cancer survivors should be treated in the aftermath of their acute care.

For example, patients may be at risk for cardiac problems. Would it be useful and beneficial to have kids screened with exercise echocardiography to see if there’s a signature that could mark abnormalities? And could doctors then know which kids or young adults need to be moved to cardiac drugs or at least undergo cardiac therapy?

Or, sometimes girls are more vulnerable to breast cancer if they had a pediatric cancer. Should they be treated with tamoxifen? Or at least be aggressively checked for signs of breast cancer, so it can be caught at Stage 1, and not Stage 3?

Her research is already yielding some answers. On the cardiac question—preliminary results indeed show that there might be great benefit to checking the heart, with the exercise echocardiography being an accurate predictor.

And such findings might open the way for exploration of other useful clinical information—from exercise to medication—that will help former pediatric patients live happy, healthy lives.

“And that’s the goal,” Mertens said. “Keep those survivorship numbers high, but make sure we give them a level of care that allows them to have a quality of life that lasts a long, long time.”