There’s the pediatric cancer population, those younger than 15. And the adult cancer population, those 40 and older. And then there’s the “in-between” patients, those ages 15 to 39, defined as adolescents and young adults (AYA), who sometimes seem as if they’ve left behind when it comes to the dramatic improvement in cancer outcomes.
“Even though they may have the same diagnosis as the 14-and-under group and the 40-and-older group, we haven’t seen the same improvement in survival as the other groups,” said Julie Wolfson, M.D., assistant professor of pediatrics in the University of Alabama at Birmingham (UAB) School of Medicine Institute for Cancer Outcomes and Survivorship.
In talking to adolescents and young adults with cancer, she said, “you learn that they’re not getting things that are important to them.” This includes financial and psychosocial support, as well as information on fertility preservation. They’re also not enrolling in clinical trials, “and we know that outcomes correlate with clinical trial enrollment.”
To address the problem, the hematology/oncology teams at UAB and Children’s of Alabama developed the Adolescent and Young Adult Oncology program for these “in-between” patients.
The team received seed funding in 2018 from Hyundai Hope on Wheels to develop the program’s infrastructure. The Vestavia Hills High School Rebels Impact through Service and Engagement (RISE) program, through the O’Neal Comprehensive Cancer Center, helped raise money for the program, enabling its expansion.
Nearly 200 AYAs have participated so far. Patients are matched with potential clinical trials and receive fertility preservation counseling and a psychosocial screen from the program’s adolescent and young adult social worker. An online support group for those 25 and younger is available.
A group of specialists from each cancer type meet in a monthly (now virtual) tumor board. “Patients really benefit from us all sharing our knowledge,” Wolfson said. Indeed, research shows improved outcomes with greater collaboration between adult and pediatric health care providers.
The feedback from the health care teams and the patients and families has been very positive, she said. “Patients express relief that someone ‘gets it,’” Wolfson said. “That they’re not a 5-year-old who wants to look at the goldfish and they’re not a 65-year-old with grandkids. There’s a lot of emotion involved and to process all that with someone at their developmental level is really important for them.”
None of this would have been possible without the leadership from the pediatric and adult hematology/oncology programs, she said. “Every AYA program looks different but ours is one of the more comprehensive I’ve seen across the country because we have amazing, collaborative clinicians. If people weren’t willing to play together in the ‘sandbox’ the way they are it wouldn’t be as successful.”
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