Issues pediatric cancer survivors face as they reach adulthood
Anna T. Meadows, MD, senior oncologist and professor of pediatrics at the University of Pennsylvania School of Medicine and director of the Childhood Cancer Survivor Program at Children’s Hospital of Philadelphia, has been involved in extensive research on childhood cancer issues since the mid-1970s. Through her work, Meadows has become a leading authority on pediatric cancer survivorship. She recently spoke to healthcare writer Susan Meyers about the issues pediatric cancer survivors face as they reach adulthood.
How did you become interested in researching childhood cancer?
As a pediatric oncologist in the early 1970s, I recognized that there were many questions regarding the psychological and physiological effects of the treatment our patients received. At that time, many more were beginning to survive for long periods, and we thought they might be cured. I became aware that these children were having problems cognitively and emotionally, but also focused on other medical and physiological problems caused by cancer treatment in children.
Tell me about the long-term side effects of childhood cancer.
More than 10 million individuals in the United States have been treated for a malignant disease; about 250,000 were younger than 21 years of age at diagnosis. With combined improvements in surgical techniques, radiation therapy, chemotherapy and other supportive therapies, studies show that 75 percent of children with cancer in developed countries now can be cured.
Despite improvements in treatment, the therapy these children receive often places them at risk for other long-term health consequences as they age. These include issues with growth and development, including linear growth, intellectual function and sexual maturation; vital organ function, especially related to the heart, lungs, kidneys and gastrointestinal system; reproduction, including fertility and the health of offspring; secondary tumors, both benign and malignant; and psychological health and well-being.
What are some of the other major survivorship issues?
A major problem with childhood cancer survivors concerns the need for adult-centered care as they grow up. As young adults, they are often thrown out into the world without sufficient knowledge of their previous cancer treatment. Even if they accept the fact that they need to be seen on a long-term basis (and many do not), they are often unable to find the appropriate caregivers who understand their needs for follow-up.
Our research has thus far been unable to describe the best methods for transition from pediatric cancer care to adult cancer care. We are studying how best to prepare young adults for this transition, and whether family practitioners, internists or gynecologists are best choices for each survivor. There are few such practitioners who understand what these survivors need, and there are limited resources to deal with young adults who need follow-up and lack insurance.
What are your current projects?
My primary research, which is being supported by the Lance Armstrong Foundation, focuses on the process of transition of care for childhood cancer survivors — from pediatric oncology care to adult-based care. My research explores how we can ensure that transition takes place at the most appropriate time and that these young adults receive the proper follow-up care and medical management throughout the rest of their lives based on the type of cancer treatment they received.
Are there programs available for childhood cancer survivors?
Most major pediatric medical centers have programs for childhood cancer survivors that focus on increasing survivors’ knowledge of therapy-related risk factors and providing surveillance and early detection of potential side effects. Reproductive counseling, health education and psychosocial support are also incorporated.
Children’s Hospital of Philadelphia started the first childhood cancer program in the early 1980s. Five years ago, we started a similar program at the University of Pennsylvania for young adult survivors of childhood cancer. Adult-based programs for childhood cancer survivors are beginning to become more prominent across the country.
Are there current recommendations available for doctors and patients?
As childhood cancer survivors age, it is critical that we as pediatric oncologists develop methods appropriate to each situation for a seamless transition to an adult healthcare setting. Unfortunately, qualified healthcare providers with knowledge of late effects are limited.
To help address this gap, the Children’s Oncology Group (COG) has developed comprehensive clinical practice guidelines for long-term follow-up care of childhood cancer survivors, which can be accessed online at www.survivorshipguidelines.org. These guidelines are frequently revised based on the available literature and the experience of our patients as they age.