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: Mental distress often untreated among adolescent, young adult cancer survivors
THE RESEARCH: : Cancer: Mental distress and health care use among survivors of adolescent and young adult cancer: A cross-sectional analysis of the National Health Interview Survey. 875 adolescent and young adult cancer survivors were identified from the 2013 and 2014 National Health Interview Survey. This survey is the principal source of information on the overall health status of the United States population and is a major data collection program spearheaded by the National Center for Health Statistics (NCHS). Survivors were compared to a matched control group. Researchers focused on the following outcomes: 1) the level of mental/psychological distress reported by survivors (none/low, medium, severe), 2) frequency of survivor interaction with mental health professionals, and 3) ability of survivors to afford mental health care.
KEY FINDINGS: Survivors reported a higher level of mental distress than the control group — moderate (23.2% vs. 16.9%) and severe (8.4% vs. 3.2%). Survivors frequently reported an inability to pay for mental health services (6.4% vs. 2.3%). Strikingly, a majority of survivors with mental distress reported that they had not talked with a mental health care professional (74.4% of survivors with moderate distress and 52.2% of survivors with severe distress). Finally, higher distress was reported by survivors with no insurance or public insurance, versus those that had private insurance.
WHAT THIS MEANS FOR CHILDHOOD CANCER SURVIVORS:
The path that childhood cancer patients take on the way to becoming long-term survivors is mentally and physical challenging and filled with emotional challenges. Numerous studies have documented the wide array of difficulties patients face. The study outlined above quantifies the level of mental distress faced by survivors in the adolescent and young adult age range, a group that is particularly vulnerable to mental distress and psychosocial challenges. The overall findings of this study are concerning because the analyses document a high level of distress in survivors, but a distinct lack of interaction with mental health professionals. This deficit is possibly due to a combination of an inability to pay for services or a reluctance to seek care. For survivors and their families, it is essential that they understand the benefits to seeking support from mental health professionals and the positive impact these interactions can have with respect to their ongoing recovery and life trajectory. Survivors are encouraged to speak with their oncologists about the mental challenges they are experiencing.
WHAT THIS MEANS FOR HEALTHCARE POLICY:
Major contributing factors to these findings are a lack of financial resources for mental health care and poor recognition of symptoms during survivorship follow-up evaluations. Recently published Psychosocial Standards of Care provide a framework for leaders in government, insurance, and healthcare to implement and improve delivery of evidence-based solutions that will improve the overall mental health for the growing population of survivors. Advocacy efforts should be acutely focused on adoption of these standards and obtaining commitments from healthcare payors (both government and private) to cover the services.
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.