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: International Guidelines for Cardiomyopathy Screening in Survivors
RESEARCH: Experts in late effects screening from the United States and Europe completed a combined review of current guidelines that direct screening for heart problems in survivors of childhood cancer. Participants in the project included representatives from the following survivorship cooperative groups: 1) the North American Children’s Oncology Group (COG); 2) the Dutch Childhood Oncology Group (DCOG); 3) the Scottish Intercollegiate Guidelines Network (SIGN); and 4) the UK Children’s Cancer and Leukaemia Group (UKCCLG). Because there previously existed a diverse range of clinical follow-up, experts reviewed available evidence and graded recommendations based on the strength of each recommendation. For the scope of this report, we will focus on the nine consensus recommendations made by this group of experts – those with the strongest evidence and lowest level of uncertainty.
KEY FINDINGS: The nine recommendations with the strongest evidence are listed below:
1. General recommendations: Survivors treated with anthracyclines or chest radiation or both and their healthcare providers should be aware of the risk of cardiomyopathy.
2. Who needs cardiomyopathy surveillance? Patients Treated with anthracyclines: Cardiomyopathy surveillance is recommended for survivors treated with high dose (³ 250 mg/m2) anthracyclines.
3. Who needs cardiomyopathy surveillance? Patients Treated with chest radiation: Cardiomyopathy surveillance is recommended for survivors treated with high dose (³ 35 Gy) chest radiation.
4. Who needs cardiomyopathy surveillance? Patients Treated with anthracyclines and chest radiation: Cardiomyopathy surveillance is recommended for survivors treated with moderate to high dose anthracyclines (³ 100 mg/m2) and moderate to high dose (³ 15 Gy) chest radiation.
5. What surveillance modality should be used? Echocardiography is recommended as the primary cardiomyopathy surveillance modality for assessment of left ventricular systolic function in survivors treated with anthracyclines or chest radiation.
6. At what frequency should surveillance be performed for high risk survivors? Cardiomyopathy surveillance is recommended for high risk survivors to begin no later than 2 years after completion of cardiotoxic therapy, repeated at 5 years after diagnosis, and continued every 5 years thereafter.
7. What should be done when abnormalities are identified? Cardiology consultation is recommended for survivors with asymptomatic cardiomyopathy following treatment with anthracyclines or chest radiation.
8. What advice should be given regarding physical activity and other modifiable cardiovascular risk factors? #1
· Regular exercise offers potential benefits to survivors treated with anthracyclines or chest radiation.
· Regular exercise is recommended for survivors treated with anthracyclines or chest radiation who have normal left ventricular systolic function.
· Cardiology consultation is recommended for survivors with asymptomatic cardiomyopathy to define limits and precautions for exercise.
9. What advice should be given regarding physical activity and other modifiable cardiovascular risk factors? #2 Screening for modifiable cardiovascular risk factors (hypertension, diabetes, dyslipidaemia, and obesity) is recommended for all survivors treated with anthracyclines or chest radiation, so that necessary interventions can be initiated to help avert the risk of symptomatic cardiomyopathy
WHAT THIS MEANS FOR CHILDHOOD CANCER SURVIVORS: Survivors that have received radiation to the chest and a class of medications called anthracyclines are at significant risk of developing cardiomyopathy. Cardiomyopathy is a potentially serious and life-threatening heart condition where the heart fails to effectively pump blood. It is irreversible, but the process of decline can be slowed with vigilant medical management. If ignored or not detected, cardiomyopathy can lead to complete heart failure and the need for a heart transplant or result in death. Common anthracyclines used in pediatric cancers include the medications doxorubicin, daunorubicin, and mitoxantrone. The other notable feature of these medications is that they are colorful (red, orange, blue) and patients may remember taking them because of their unique appearance. From the recommendations above, it is obvious that all survivors should be acutely aware of the exposure doses of anthracyclines and chest radiation that they received as part of their cancer treatment regimens. If survivors seek medical evaluation for any symptom, and especially those that are heart related, they should make sure their medical providers understand their individual risks that stem from their pediatric cancer therapies. As always, consistent annual survivorship follow-up care is recommended for all survivors.
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.