Significant improvements in pediatric cancer management means that an estimated 84 percent of children and adolescents diagnosed with cancer will become long-term survivors. However, while they may have overcome their original malignancy, they have a high risk of complications, including impaired growth, heart and lung problems, secondary cancers, learning disabilities and vision or hearing problems.
Yet, said Smita Bhatia, M.D., MPH, who directs the Institute for Cancer Outcomes and Survivorship at the University of Alabama at Birmingham (UAB) School of Medicine, “Research shows that primary care physicians are reluctant to take care of cancer survivors because these survivors have so many treatment-related complications. Often, these kids fall through the cracks.”
That’s where the Taking on Life After Cancer (TLC) survivorship program comes in. It focuses on improving the health and well-being of childhood cancer survivors and is the only clinic of its kind in Alabama.
“There is an increased need to provide care tailored to the long-term survivors of pediatric cancer,” said the program’s Medical Director Kimberly Whelan, M.D., MSPH. Not only are they at increased risk for numerous medical problems, she said, but they also often experience neurocognitive issues that can impact their schooling or job performance. “We strive to look at them holistically and see how they’re doing physically, emotionally and mentally, and give them the tools they need to succeed in life.”
When the clinic began in 2004, patients were seen just once starting two years after their last treatment. Today, patients are seen annually. “We learned that following them long term is important because the issues they face two to three years after treatment are different than the ones they may face five or 10 years after therapy,” Whelan said.
Wendy Landier, Ph.D., RN, CRNP, manages the clinical aspects of a patient’s visits. During the one-day visit, patients and their families see a physician or nurse practitioner who specializes in survivorship care, as well as a social worker to help with any issues related to costs and insurance. A neuropsychologist screens for problems with school or job performance. “The visit is tailored to meet the individual needs of each survivor,” she said. “For instance, educational materials are personalized so they address the specific treatment that each survivor received, as well as the potential complications that can arise as a result of that treatment.”
Patients also have the opportunity to participate in research studies designed to advance knowledge about survivorship issues. “We’re trying to learn more about why some survivors have certain complications and others don’t, and to develop mechanisms to reduce those complications,” Whelan said.
All visits are tailored to the individual child, their cancer and previous treatments. So a child who previously received radiation therapy to the chest, for instance, will undergo tests to assess lung and heart function. Other children may need their bone health checked regularly.
One task the clinic doesn’t do is screen patients for any recurrence of the original cancer, Whelan said. “So maintaining their relationship with their primary oncologist is important,” she said.
Patients are referred by their primary care physician or self-refer, Whelan said. Either way, the patients’ primary doctor receives summary reports. “We would love to partner more with the primary care physicians in the care of these patients,” she said.
The clinic currently follows about 500 patients, with another 100 added each year. All can be seen for the rest of their lives, regardless of age. “Our goal is to make sure they stay healthy,” Whelan said.
Dealing With a Cancer Diagnosis
Learn about Children’s of Alabama’s Hope and Cope Psychosocial Program.