Emerging Trends in AYA Cancer Care: Finding Time for Follow Up
by Dr. Damon Reed
Adolescents and young adults (AYAs) with cancer have traditionally fallen into a gap in health care. In the United States over 70,000 AYAs between the ages of 15–39 are diagnosed with cancer each year and cancer is the primary disease-related death for this age group. Survival rates for AYAs has not seen a considerable improvement since 1975 which could be attributed to a delayed diagnosis, lack of clinical trial participation and an oncologic setting specialized in very young or very old treatment modalities.
AYA patients have other unique needs beyond basic treatment including fertility, psychosocial support and survivorship services. In fact, a recent study found that nearly half of AYAs diagnosed between 2005–2009 and a third diagnosed between 2010–2014 did not see an oncologist in 2016 even though we know they are at an increased risk for secondardy malignancies and long-term health issues.
Critical Mass asked me to respond to this report with what we have done at the Moffitt Cancer Center AYA Program to address the unique survivorship needs of the AYA patient population. We care for about 1,500 new AYA patients every year and routinely see about 125 AYA patients every day. To meet their age specific needs we are building services and a program comprised of a multidisciplinary team of pediatric, surgical, medical, and radiation oncologists; nurses and social workers, psychologists and peers. Each team member brings their specific skills to care for AYA patients. Our goal of building an AYA Center of Excellence at Moffitt Cancer Center is supported by the administration, staff and other disease specific champions throughout Moffitt.
The patient experience has been improved through the opening of the Swim Across America AYA lounge which allows patients to gather throughout the day in an environment they designed. Social events also occur monthly and are at times educational with cancer center experts participating in the activity around an important AYA theme. We work to educate patients about the healthcare system, in particular focusing on fertility preservation and the importance of clinical trial participation.
While a focus of the program is team science research to better understand the biology of AYA cancers, we work across many aspects of AYA care. Recently, we started an AYA specific Survivorship Clinic to focus on late effects andlong term health after cancer care for survivors of young adult cancers. This effort has been led by Drs. Drew Galligan and Smitha Pabbathi. They focus on providing recommendations for screening and management of late effects to ensure optimal health going forward once cancer is unlikely to return. Their care can increase awareness, anticipate, and prevent future health problems unique to this population and is a critical part of best care delivery for the AYA population. Recent studies have suggested that these types of programs have not optimally been utilized by the AYA population.
Moffitt’s AYA Program exists to help young adult patients and their families survive and thrive after a cancer diagnosis. Let’s continue to keep raise awareness about the unique needs of these patients and survivors to ensure no patient is falling through the cracks.
This piece is part of the 2018 Adolescent and Young Adult Cancer Awareness Week education series. You can download the Young Adult Cancer Advocacy in Action Toolkit here: https://goo.gl/56rJvk
Dr. Damon Reed is the Director of the Adolescent and Young Adult Program at Moffitt, Associate Member of the Sarcoma Department at Moffitt Cancer Center and an Associate Professor of Oncologic Sciences at the University of South Florida. He is also an on staff as a specialty physician at Johns Hopkins All Children’s Hospital in St. Petersburg, FL. He is the Leader of the National Pediatric Cancer Foundation’s pediatric phase I consortium, the Sunshine Project (www.nationalpcf.org). Dr. Reed’s research interests include chemotherapeutic approaches to sarcoma in the pediatric and adolescent and young adult population. He is interested in establishing relevant preclinical sarcoma models, establishing and testing biomarkers for targeted therapies and translating predictive testing and combinations of agents towards personalized medicine in sarcoma and other rare cancers. A graduate of Case Western Reserve University School of Medicine in Cleveland, OH, Dr. Reed served a combined pediatric residency program at Boston Children’s Hospital-Harvard Medical School and Boston Medical Center-Boston University School of Medicine. He completed his fellowship training in pediatric hematology/oncology at St. Jude Children’s Research Hospital. He joined Moffitt in 2008. Learn more about the Moffitt AYA Program here.
