Researchers Help to Improve Young Cancer Survivors' Quality of Life

One of the extraordinary achievements of modern medicine is that physicians can cure 85 percent of children diagnosed with cancer. About 380,000 survivors of childhood and adolescent cancer are living in the U.S. Researchers continue to provide better options in chemotherapy, radiation, and surgical techniques; however, once these therapies end, young cancer survivors’ journeys are far from over.

A research team at The Children’s Hospital of Philadelphia is dedicated to studying the late effects of childhood cancer, which can include second cancers, heart disease, infertility, anxiety, depression, and other conditions. They are focused on helping survivors and their families understand what they have been exposed to during treatment, be vigilant about their future risks, and make the transition to an adult care model.

Jill P. Ginsberg, MD, a pediatric oncologist and director of the Cancer Survivorship Program at CHOP, has been fortunate to follow some of her patients since they were infants and into their college years, which she described as “really remarkable.” Today, she said, CHOP is at the forefront nationally in terms of cancer survivorship care and late-effects research.

“What sets us apart is that we are truly multidisciplinary,” Dr. Ginsberg said. “Not only does our core team include outstanding nurses, nurse practitioners, and psychologists, but we also have an extended group of subspecialists at CHOP who are keyed into the long-term effects of treatment. Many research initiatives have come out of our group interactions with patients because we collaborate across disciplines.”

For instance, Goli Mostoufi-Moab, MD, MSCE, a dual-certified pediatric oncologist and endocrinologist at CHOP, has taken the lead to study endocrinopathies, which are among the most common late effects of cancer treatment, affecting up to 40 to 60 percent of childhood cancer survivors. Dr. Mostoufi-Moab is especially interested in cancer survivors’ risk for poor bone health due to these numerous endocrine abnormalities, which include abnormal growth, thyroid disorders, and pubertal disorders.

Another research focus is transition readiness of adolescent and young adult survivors of childhood cancer. Wendy Hobbie, RN, MSN, CRNP, FAAN, associate director of the Cancer Survivorship Program, and Lisa Schwartz, PhD, a pediatric psychologist, are finding ways to better facilitate the process so that patients can begin to take control of their own health history and enter the adult health care world better prepared to handle their medical conditions.

“Appropriately, parents are the keepers of their young children’s medical history,” Dr. Ginsberg said. “With guidance from the Cancer Survivorship Program and their parents, survivors in their teen years become empowered to handle their own medical issues, and we help them learn to advocate for themselves.”

The Cancer Survivorship Program’s efforts in fertility preservation are a research priority that has gained national attention. An estimated 35 percent of prepubescent boys are at risk of sterility following cancer treatment, Dr. Ginsberg said. CHOP’s groundbreaking testicular tissue cryopreservation program can offer families hope that their tissue could one day be used to produce viable sperm. Only prepubescent boys at the highest risk for infertility are approached to take part in the program because the procedure remains experimental. All post pubescent boys set to undergo cancer treatment at CHOP, regardless of cancer type, have the opportunity to participate in sperm banking. Moreover, for young female patients at risk for infertility and premature ovarian failure, egg harvesting and ovarian tissue freezing are options available at CHOP.

In addition to these in-house research projects, The Cancer Survivorship Program participates in research on the national level, including studies with the Children’s Oncology Group (COG) chaired by CHOP’s Peter Adamson, MD. The Childhood Cancer Survivor Study (CCSS) involves 34,000 survivors of childhood cancer diagnosed between 1970 and 1999. Many of these study participants are CHOP patients and their families. The study is investigating the long-term effects of cancer and its associated therapies.

“Contributing to these larger studies is important to all of our patients,” Dr. Ginsberg said. “Being a part of a research study is what they’ve grown up doing here at CHOP. It’s a piece of the fabric of these extremely giving patients and their families. They like knowing that they are continuing to be part of the research process to help improve the lives of the next generation of survivors.”

Looking toward the future, Dr. Ginsberg is excited about the possibilities of how the scope of late-effects of cancer will change as new therapies emerge and evolve. Proton therapy, for example, hones in on tumors and spares healthy tissue from radiation exposure. Practical issues that emerge from refined cancer therapy treatments include questions of how will those survivors’ late effects compare with those who received conventional radiation therapy.

“Cancer survivorship and quality of life is an area of intense research,” Dr. Ginsberg said. “As pediatric oncologists, we want to improve the cure rate with less future toxicity, and part of our responsibility is to focus on young patients’ quality of life afterward, as they have long and productive lives to live.”