Key Health Outcomes of Long-Term Cancer Survivorship

Although pediatric cancer is rare, more than 80% of cases are curable. As a result, there are now more than 500,000 childhood cancer survivors nationwide — 1 in 750 young adults. But what happens to their care when they no longer need a dedicated oncology team and treatment protocol? As the population of survivors grows and ages, specialized care to screen, monitor and care for delayed effects of cancer treatment — or “late effects” — is imperative. 

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“Thanks to our ability to diagnose cancers earlier and deliver more targeted and effective therapies, cancer survivors are living much longer than in the past,” said ZoAnn Dreyer, MD, Sidney L. and Donald F. Faust Professor in Pediatric Cancer Survivorship and clinical director of the Long-Term Survivor Program at Texas Children’s Cancer Center. “Childhood cancer survivors need dedicated clinicians to care for late effects of cancer therapy and to identify potential second malignancies.” 

That need is overwhelmingly underscored by recent survivorship research, which shows that, in addition to the risk of developing a second malignancy, childhood cancer survivors are more likely to have chronic health conditions, neurocognitive deficits, accelerated aging, as well as a variety of adverse psychosocial outcomes than their peers without cancer.  

“We’ve seen these late effects in our own population,” Dr. Dreyer said. “One-third of childhood cancer survivors developed a severe, disabling or life-threatening chronic health condition within 20 years of completing therapy.” 

Dedicated survivorship care 

The risk for late effects is determined by each individual survivors’ treatment regimen, including the specific anti-cancer drugs and the associated dose or cumulative exposure, and the dose, field and type of radiation therapy. Risk is further influenced by genetic susceptibility, demographics, socioeconomic factors and behavioral choices. Identifying an individual survivor’s specific risks and ensuring proper monitoring and follow-up requires specific expertise.  

Enter Texas Children’s Cancer and Hematology Center’s Long-Term Survivor Program, whose world-renowned faculty, led by Dr. Dreyer, monitors more than 2,000 patients for delayed side effects and complications caused by their previous cancer therapies. This prestigious program sees childhood survivors, beginning two years after the completion of cancer therapy, regardless of primary treatment center or financial means. 

The Long-Term Survivor Program is one of only a few pediatric programs in the U.S. to provide survivorship care throughout a patient’s life. Clinicians meet with most survivors annually to review prior therapy and the potential associated long-term complications. They also do a complete assessment based on the individual’s risks, and conduct a thorough review of systems, interval history and physical exam. Because survivors may experience complex psychosocial effects, each visit also includes a visit with a social worker and financial counselor, another important aspect of the survivorship program.  

A core element of the program is Passport for Care^®, developed by David Poplack, MD, director, Global Hematology-Oncology Pediatric Excellence (Global HOPE) at Texas Children’s Cancer Center, in collaboration with the Children’s Oncology Group (COG), to provide clinicians and patients with individualized screening guidelines based on their treatment history. The site enables pediatric oncologists or their staff to enter details about the specific types and scope of cancer treatment that the survivor received into a secure database. An algorithm in Passport for Care^® then generates a personalized summary derived from the COG Guidelines that includes information about and individual’s risk for late effects as well as recommendations for screening. This personalized summary and recommendations can be shared with others, including primary or specialty care providers. Passport for Care^® has been adopted by over 160 childhood cancer centers nationally and abroad, with nearly 50,000 survivor treatment histories entered to date. 

The future of survivorship care 

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Research emanating from Texas Children’s Survivorship Program is focused on uncovering genetic and molecular factors that impact late effects. Monica Gramatges, MD, PhD, research co-director of the Long-Term Survivor Program, develops and facilitates the program’s local and national collaborative research. 

“Our research objective is to understand the contributions of genetic and clinical factors to an individual’s risk of developing late effects. We aim to improve identification of at-risk survivors, as well as to develop successful interventions that prevent or treat late-onset complications of cancer therapy, including the risk of developing a second cancer,” Dr. Gramatges said. “In addition, our current research focuses on identifying and addressing outcome disparities in survival and toxicity that occur in under-represented minorities.” 

Most of what researchers and clinicians know about cancer has been developed from years of studying a relatively homogenous cohort of survivors. Since current survivorship guidelines are informed by data from relatively homogenous patient cohorts, risk assessments may be skewed toward the experience of white, non-Hispanic survivors. We have therefore made it a high priority to diversify survivor research cohorts to objectively inform our understanding of how risk may vary in different populations. This information will strengthen and enhance the generalizability of current survivorship guidelines.  

“Our mission is to deliver equitable survivor care,” Dr. Dreyer said. “We aim to provide comprehensive, integrated care that is designed to maximize quality of life and long-term survival; conduct research to predict, prevent and treat late effects; and train future leaders in survivorship.” 

To learn more or sign up for the Passport for Care Clinician Website, visit Texas Children’s Hospital’s Long-Term Survivor Program.