Childhood Cancer Survivors have their own unique set of issues that often go unaddressed by health care professionals once treatment has ended and the child enters adulthood. Although the last 20 years have seen growth in survivorship research, this research is rarely filtered down to the people who need it most – the survivors and their families. Dr. Gregory Aune, Pediatric Oncologist, researcher, childhood cancer survivor and advocate, has taken on the position of CKN Editor, Knowledge Translation – Childhood Cancer Survivorship. His goal is simple: to help empower childhood cancer survivors to start a dialogue with their doctors by publishing short, easy-to-read research study summaries, like this one.
THE HEADLINE: Comprehensive study of chronic disease reveals vulnerability of childhood cancer survivors.
RESEARCH: Researchers at St. Jude Children’s Research Hospital reported data collected retrospectively through the St. Jude Lifetime Cohort Study (SJLIFE). Patients selected for inclusion in this study had previously received their cancer treatment at St. Jude, had survived 10 years or longer from initial diagnosis, and were 18 years or older on June 30, 2015. For comparison, age-matched and sex-matched control subjects from the local community were used. Researchers then used a novel method of statistical analysis called cumulative burden, to estimate the lifelong impact of 168 chronic health conditions in the 5,522 adult survivors of childhood cancer meeting the requirements noted above. The contribution of 21 treatment exposures to these chronic health conditions was additionally assessed.
KEY FINDINGS: Of the 5,522 survivors, 3,010 were still alive and 2,512 were not clinically evaluable. The cumulative burden of chronic health conditions at age 50 was 99.9% for grade 1-5 and 96% for grade 3-5. By age 50, the average survivor had experienced an average of 17.1 chronic health conditions of any grade, of which 4.7 were the more severe grade 3-5. As expected, the comparison group from the community that were not childhood cancer survivors showed a much lower cumulative burden of chronic health conditions – for grade 1-5, 9.2% and grade 3-5 of 2.3%. Major contributors to cumulative chronic disease burden included second malignant neoplasms, spinal disorders, and pulmonary disease. Chronic disease burden was most pronounced in survivors of CNS malignancies and lowest in germ cell tumor survivors. Finally, older age at diagnosis, treatment era, and higher doses of brain and chest radiation were significantly correlated with greater cumulative burden and severity of chronic health conditions.
WHAT THIS MEANS FOR CHILDHOOD CANCER SURVIVORS: This is one of the oldest cohorts of childhood cancer survivors that has ever been studied and it confirms what numerous cohort studies have already documented: that survivors face extensive health problems caused by their treatments. Additionally, this study highlights how these problems accumulate with age and there is no sign that suggests the problem will be reversed with aging. It is therefore increasingly important for older survivors to make certain that they have consistent medical follow-up. In addition, those patients that received higher doses of chest and brain irradiation and survivors of CNS cancers are particularly at risk of developing an extensive array of chronic health problems.
WHAT THIS MEANS FOR HEALTHCARE POLICY: The authors argue that perhaps the time has come to reconsider the current strategy to provide health care for the growing population of childhood cancer survivors. Their assessment; “Although adjunctive survivorship care clinics and close adherence to survivorship guidelines in primary health-care settings are the current global standard, the numerous morbidity profiles that we describe suggest that survivors might benefit from specialized health-care delivery, similar to that being advocated for other high-risk populations.” The authors further state, “This combination of poor access to health services combined with severe excess morbidity we present in our analysis confirm the vulnerability of this population and question whether consultant long-term follow-up in which primary responsibility remains with community physicians is sufficient.” As these types of conclusions become more frequent, all survivors need to be ready to share the stories with respect to their difficulties in obtaining access to high quality care. The tangible evidence of frustration and difficulty will be an important force in changing the health care system for survivors for the better.
Medical Disclaimer: The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web site is for general information purposes only. If you feel the research summarized applies to you or someone you know, talk to your doctor about your concerns.
Videos with Dr. Aune
Presentation on YouTube (Jan 2015): Eliminating Long-term Health Effects in Cancer Survivors – Gregory Aune, MD, PhD
Interview for the National Coalition for Cancer Survivorship (June 2015): Hodgkin’s Lymphoma Survivor Dr. Greg Aune Discusses Issues in Long-Term Survivorship Care
Interview with the Washington Post Live Summit (Dec 2016): How cancer lives on in young adults after treatment ends
Dr. Gregory J. Aune is the Stephanie Edlund Distinguished Professor of Pediatric Cancer Research and a St. Baldrick’s Foundation Scholar. His experience in pediatric cancer spans over 27 years and encompasses his own patient experiences, research in experimental therapeutics, clinical care of pediatric oncology patients, and childhood cancer advocacy. His interest in pediatric oncology began at age 16, when he was diagnosed with Hodgkin’s lymphoma. While fortunate to survive, the experiences he encountered as a patient initiated a path towards a research and clinical career aimed at developing less toxic chemotherapy regimens. His experience as a long-term survivor included open-heart surgery at age 35 to replace his aortic valve and bypass three blocked coronary arteries that were damaged by his teenage cancer therapies. This life-changing event initiated his research interest in cardiac disease. His training to become a successful physician scientist and pediatric oncologist has included time spent at some of the most well-respected oncology institutions in the United States including, M.D. Anderson Cancer Center, the National Cancer Institute, and Johns Hopkins Hospital.
Dr. Aune is a national leader in childhood cancer advocacy efforts. In San Antonio, he has been a leader in local fundraising and awareness efforts. Since 2010, he has spearheaded efforts by the St. Baldrick’s Foundation and For the Kids Dance Marathon at the University of Texas San Antonio that have raised over $830,000 for childhood cancer patients and research efforts. In September 2014, his appointment to the National Cancer Institute Council of Research Advocates (NCRA) was announced by NCI Director Dr. Harold Varmus at a White House briefing on childhood cancer.
In addition, Dr. Aune is a policy advisor for the National Coalition for Cancer Survivorship, serves on the Board of Directors of the American Childhood Cancer Organization, is a member of the St. Baldrick’s Foundation National Advocacy Committee, and serves on the scientific advisory board for the Canines-N-Kids foundation.
In May 2015, Dr. Aune addressed the 68th World Health Assembly in Geneva, Switzerland and called on the World Health Organization to make childhood cancer a top global health priority.