Teen Cancer Awareness All Year Round

The third week in January is national Teen Cancer Awareness Week, a time to shine light on the unique medical, emotional and psychosocial needs of teens with cancer. But one organization focuses on these concerns year-round: Teen Cancer America (TCA). TCA promotes the message that teens going through cancer deserve their own space, medical teams, treatment and research.

Bridging a Gap in Medical Care

Sandwiched between children and adults, adolescents are often a neglected class in medical treatment.

Research shows that over the last 30 years, some cancers that affect adolescents and young adults (AYAs) have not shown significant improvements in outcomes, while progress has been made in pediatric and adult cancers. There have not been as many clinical trials accepting AYAs as there are for adults and children, so research progresses more slowly. Research on rare cancers that affect teenagers is also lacking.

TCA aims to help bridge this gap by bringing together physicians and other health care professionals, working locally with individual cancer centers, and with partners worldwide.

Supporting Needs of AYAs

AYAs have emotional and psychosocial needs that are unique to their age group. Young people with cancer struggle to manage their conditions at the same time as they are developing their identity and sense of self.

Cancer can be isolating, and when it happens at a time in life when socialization is crucial for development, it can have a devastating effect on an individual’s growth. Teens often feel isolated from their peers, as they spend long hours in hospitals for treatment. They also feel like they don’t belong in either the pediatric environment, where there are cartoon characters on the walls of their hospital units, or in the relatively cold adult hospital wards.

Building specialized, age appropriate facilities, creating dedicated multidisciplinary teams, and providing age-focused treatments and support, are important goals of the TCA, said Executive Director Simon Davies. Teen units are vibrant environments with computers, games and lounge areas that encourage socialization.

“We engage young people in the design of their own facilities and programs at a hospital level,” said Davies. “It is something that we support at all of the hospitals that we work with to achieve. As Roger Daltrey says frequently, ‘There is no better therapy for a teenager than another teenager.’ They know best how they want to be treated and that is our mantra when we work with our hospital partners in designing facilities and programs.”

Why quote legendary rocker Roger Daltrey, from The Who? Daltrey is one of the founders of Teen Cancer America.

Rocking Roots

In the early 1990s, Roger Daltrey and Pete Townshend of The Who became patrons of Teenage Cancer Trust, a pioneer advocacy organization for AYAs in the UK, as a way to give back to the teenage generation that made them so successful. Since then, the organization has been working to help create adolescent treatment centers within hospitals, with multidisciplinary staff that is dedicated to supporting the needs of AYAs.

Teenage Cancer Trust helped establish standards for AYA care in the UK. The patrons then turned their attention to the United States, where there is still much room for progress in this area.

To date, TCA has helped develop facilities and/or programs in the following institutions:

• Bon Secours St. Francis Medical Center
• Children's Hospital of Philadelphia
• Dana-Farber Cancer Institute
• Fort Worth Adolescent and Young Adult Oncology Coalition
• Lucile Packard Children's Hospital Stanford
• Memorial Sloan Kettering Cancer Center
• Moffitt Cancer Center
• Monroe Carell Jr. Children's Hospital at Vanderbilt
• Rainbow Babies and Children's Hospital/Seidman Cancer Center
• UCLA Health
• University of Chicago Medicine Comer Children's Hospital
• Yale New Haven Children's Hospital
• Norton Children's Hospital and Cancer Center
• UNC Lineberger Comprehensive Cancer Center, University of North Carolina

Simon Davies, previously executive director of Teenage Cancer Trust, now leads Teen Cancer America in similar efforts, drawing on his UK experience as a foundation, and reaching out to global partners for collaboration and education.

Global Collaboration in the AYA Space

In December 2017, TCA hosted the second global Adolescent and Young Adult Cancer Congress, along with Teenage Cancer Trust, UK and CanTeen Australia, in Atlanta, Georgia, to promote global advances in AYA cancer treatment and service. Four hundred delegates attended from 125 hospitals in 23 countries, representing 20 professional oncology disciplines — including scientists, doctors, nurses and other allied health professionals.

“The speakers were world class and the breadth of material ranged from advocacy in the digital age to the latest advances in genetic predisposition,” said Davies.

Highlights included:

• A unique take on the collaboration between academic and community hospitals, presented by Karen Halaburt Albritton, M.D., Medical Director, Adolescent and Young Adult Program Hematology and Oncology Center, Cook Children’s;
• A Belgian/American partnership describing the transatlantic commonalities in the importance of the nurse navigator/practitioner roles in AYA care and support, delivered by Amelia Baffa, AYA Cancer Nurse Navigator, University Hospitals of Cleveland Medical Center and Johan De Munter, Nurse Consultant, Hematology, HSCT University Hospital Ghent;
• An explanation of the important progress being made in precision genomics that will improve AYA survival by Dr. John Perentisis, M.D., FAAP, Director, Division of Oncology, Institute Co-Director, Cancer and Blood Diseases Institute, Cincinatti Children’s; and
• A challenge to the professional audience to “up their game” in addressing sexuality with AYA's, raised by Anne Katz, Ph.D., RN, FAAN, Editor, Oncology Nursing Forum.

“A special highlight for me was an international panel of young survivors who were interviewed by celebrity TV journalist Charissa Thompson about their experiences of the health system and how it could be improved to help young people,” said Davies. “Their impact on the audience was profound."

Davies went on to say that the most important outcome of this meeting has been the strengthening of the AYA professional community. “There was such a strong appetite for change to ensure that the needs of young people are given a much greater focus in health delivery,” he said. “In America that means systemic changes in pediatric and adult oncology to ensure improved experience, outcomes and survival for a group that has been traditionally marginalized. This is a movement for change and Congress has provided a launch pad for us to embed the Teen Cancer America philosophy and models within in the U.S. Health System."

Next year, the Third Global Adolescent and Young Adult Cancer Congress will be held December 4th - 6th 2018 in Sydney, Australia. For more information on that meeting, e-mail info@ayaglobalcancercongress.com.