Nearly 80 percent of children treated for cancer are now cured of their original disease due to vast improvements made over decades past, according to the National Cancer Institute. However, the survivors of pediatric cancers are also more likely to have long-term health complications.
To assist these patients, Emory researchers created “SurvivorLink”™, at http://www.cancersurvivorlink.org/ for pediatric cancer survivors, their families, and physicians. Currently, SurvivorLink has 225 registered users, contains patient, provider, and research portals, along with educational materials on survivorship, and helpful links.
Primary care physicians might have only two or three patients who are pediatric cancer survivors, and almost always with different diagnoses. “Doctors tell us that what they need are patient case summaries that are quickly and easily accessible”, said Ann Mertens, PHD, Developer of SurvivorLink, Pediatric Endocrinologist, and Medical Director of the Cancer Survivor Program at Children’s Healthcare of Atlanta.
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. About 70 percent of pediatric cancer survivors experience chronic health conditions late in life.
Funded by a three year grant of more than $1 million from the Agency for Healthcare Research and Quality within HHS, the database connects patients and their families with the ability to virtually consolidate their medical histories, records, and follow-up care as they age and provide valuable information to their doctors.
In another move to help cancer survivors, University of Kansas (KU) research has led to the creation of a new startup company that will develop online curriculum for healthcare professionals involved in managing the care of cancer survivors. The goal is to create e-learning solutions to keep healthcare providers current on issues of importance to cancer survivors.
Cancer Survivorship Training Inc. (CST) has finalized a licensing agreement with KU to commercialize the research done by Dr. Jennifer Klemp, a researcher in the university’s departments of internal medicine, nursing, and psychology. According to Klemp, most cancer patients lack guidance on the healthcare they require for common late and long term effects of cancer or its treatment.
“More than one-third have unmet psychosocial needs. Also, many cancer patients do not receive adequate health promotion, cancer screening, and the proper coordination of care needed for post treatment and for long term survivorship.”
CIT will provide online and mobile resources to healthcare professionals to help them better treat and provide advice to cancer survivors. CST plans to officially launch its suite of online and mobile solutions to healthcare professionals in May.