Programs targeting adolescents and young adults with cancer have sprung up in recent years as hospital leaders have recognized a treatment opportunity for this sometimes overlooked age group.
A 2013 survey identified 22 such programs, and a more informal update recently found roughly a dozen more are offering AYA-specific services, according to Rebecca Block, who conducted the survey for Critical Mass, a nonprofit organization for adolescents and young adults with cancer.
The programs have been driven by data showing that survival has lagged for some cancers in this age group — defined as patients ages 15 to 39 — including for acute lymphoblastic leukemia, breast cancer and colon cancer, according to a 2014 article in the Journal of the National Comprehensive Cancer Network.
Moreover, these patients can feel emotionally stranded, says Susan Parsons, M.D., who founded the Reid R. Sacco AYA Cancer Program at Tufts Medical Center in Boston. “You look around and see 3-year-olds using glitter glue or you see 70-year-olds dealing with prostate cancer, and it’s just really isolating and alienating,” Parsons says.
More than 70,000 people ages 15 to 39 are diagnosed with cancer each year, roughly six times the number of diagnoses in younger children, according to the National Cancer Institute. Plus, many more of these patients are insured under the Affordable Care Act, which includes coverage under a parent’s policy until age 26, says Archie Bleyer, M.D., a longtime AYA cancer researcher.
Some elements to keep in mind, according to Bleyer and other experts, when establishing an AYA cancer program:
- Quantify the need: While diagnoses in this age group constitute about 5 percent of all malignancies, the demand for services may vary from hospital to hospital. When leaders at Moffitt Cancer Center in Tampa, Fla., were looking to develop a program, they determined that AYA patients constituted 12 percent of all new patients and were filling roughly one out of 10 beds, according to the 2014 JNCCN article on creating AYA programs.
- Linking up: While many in the first wave of AYA programs started at pediatric facilities, they also have been established at adult hospitals, Bleyer says. Increasingly, the focus is on building bridge programs in which adult and pediatric hospitals refer and consult on patients based on their medical and social needs, even involving facilities that aren’t otherwise affiliated.
- Create private space: If a hospital can’t establish an inpatient unit or a designated outpatient space, it can break out specific clinic hours for this age group, Parsons says. The goal, she says, is to ensure the patient is “sitting in a waiting room and looking around and seeing people who look like [the patient].”