Pediatric Cancer Survivors
SurvivorLink™: An Online Resource for Survivors of Pediatric Cancers
Nearly 80 percent of children treated for cancer are now cured of their original disease, according to the National Cancer Institute—a vast improvement over decades past. But survivors of pediatric cancers also are more likely to have long-term health complications. To assist these patients, Emory researchers have created SurvivorLink™ (cancersurvivorlink.org), a website for pediatric cancer survivors, their families, and physicians.
SurvivorLink™, developed by Ann Mertens, PhD, a pediatric cancer epidemiologist, and a team of cancer and IT specialists, provides a survivor healthcare plan which includes a patient's risk profile and recommended screenings. "In consultation with a panel of experts including our investigators, the Children's Oncology Group has developed guidelines based on the type of cancer they had and the treatments they received," Mertens says. "These are instrumental in how we care for our cancer survivors."
Funded by a three-year grant of more than $1 million from the federal Agency for Healthcare Research and Quality, SurvivorLink™ is unlike any existing database. It is meant to be a connection point for patients and their families, a place to virtually consolidate their medical history, records and follow-up care as they age, and a way for doctors to get up to speed on their case immediately.
The SurvivorLink™ team worked with Emory's Office of Technology Transfer to ensure the intellectual property was appropriately protected. "We helped the team navigate potential IP issues and provided feedback and suggestions," said OTT licensing associate Cliff Michaels. "The site provides a much needed service and wealth of important information; we are proud to be involved in this project."
Due to their original disease and harsh treatments such as chemotherapy and radiation, pediatric cancer survivors can suffer "late effects" such as osteoporosis, heart disease, lung problems, and secondary cancers. In fact, about 70 percent of pediatric cancer survivors experience chronic health conditions later in life. "This is so helpful for patients and parents of children with complex health problems," says Lillian Meacham, MD, a pediatric endocrinologist and medical director of the Cancer Survivor Program of the Aflac Cancer Center and Blood Disorders Service for Children's Healthcare of Atlanta.
Primary care physicians might have only two or three patients who are pediatric cancer survivors, and almost always with different diagnoses. "Doctors told us the primary thing they needed was for the patient's case summary to be quickly and easily accessible," Mertens says.And if the family moves or switches providers for insurance purposes, or the survivor goes away to college, "with three easy clicks they can share all their information with their new physician," adds Meacham.
SurvivorLink's secure site, which currently has about 225 registered users, contains patient, provider, and research portals, with educational materials about survivorship, the latest research, and helpful links. The educational materials are available to anyone who visits the site, which receives page views from all over the world and the U.S. There is a box that allows patients to indicate an interest in participating in research studies.
"We'd like to build a longitudinal health record that goes across survivors' lifetimes. This has been missing," Mertens says. "The aim is to give them a healthy quality of life moving forward."
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