When Gary Dahl, MD, attended a presentation at the American Society of Hematology a decade ago, he was stunned to learn that the survival rate for patients aged 19 to 21 could show as much as a 40 percent difference depending on whether they were treated by pediatric oncologists using pediatric oncology protocols or treated by internists with adult oncology protocols. "Same age. Same disease. Different treatments. Different outcomes." said Dahl, professor of pediatric hematology/oncology.
When a young child is diagnosed with cancer, eight times out of 10, that child will be treated in a clinical trial and parents typically ensure that their child adheres to the treatment protocol. When cancer strikes in adolescence or young adulthood, the situation is different. Treatment protocols differ. There is less access to clinical trials. And, crucial to outcome, adherence to treatment can falter because now the young adult patient is managing adherence. "Survival outcomes are not good for this population," said Michaela Liedtke, assistant professor of hematology.
To address the specific issues that affect outcomes for this age group, Stanford launched the Stanford Adolescent and Young Adult Cancer Program (SAYAC) in April. The program is open to patients, age 15 to 29, who are being treated for sarcomas at Stanford or Lucile Packard Children's Hospital. The program will be expanded to other types of cancer over the next six to eight months.
"These patients don't fit into the pediatric world or the adult world," said Pam Simon, NP, who leads the program with co-medical directors Dahl, an SCH oncologist, and Liedtke, an SHC hematologist. "Many of their issues are not always addressed and fall though the cracks."
The type of supportive care provided by SAYAC is guided by the patient's own goals. It focuses on maximizing their quality of life during and after treatment. Once a patient is referred to the program, Simon meets with them in the inpatient or outpatient setting and uses a questionnaire to identify their concerns. She then works with each patient's oncology team to link patients with clinical trials and education specific to the cancer that has been diagnosed. She also connects them with support services, including psychology, holistic medicine, palliative care, non-pharmacologic pain management including acupuncture and hypnosis, recreational therapy, yoga, mindfulness and nutrition.
For many patients in this age group, fertility preservation is a top priority. Simon works as the conduit between these young patients and Stanford Reproductive Endocrinology and Infertility (REI) to set up a comprehensive fertility consultation. The program now includes cryopreservation. Other patients want to continue to attend school or work throughout their treatment. Goal-oriented therapy is at the foundation of the services provided, said Simon.
"A cancer diagnosis can throw a wrench into everything," she said. "We want to make sure that we're looking at the issues they're having to help get them back to their goals quickly."
The program also links new patients with a psychosocial consult from a psychologist dedicated to this age group to help them develop coping skills to use throughout their treatment. Most patients need to learn how to respond to their bodies and to understand what's going on when they get anxious or nauseous, said Simon. Counseling on body image is also provided because it can affect treatment compliance, said Liedtke. "The medications can make patients feel lousy and affect their looks," Liedtke said, "so many patients stop taking them."
Cancer at this age is also very rare, and therefore, very isolating, said Simon. "These patients don't feel like there's anyone else their age with cancer." The recreational therapist at Packard is available to see patients at both hospitals, and plans to develop peer-to-peer events to give young patients an opportunity to interact with others who share their unusual circumstances.
"What we realize now is that patients in adolescence and young adulthood are maturing humans who need different types of support than children or adults do," said Dahl. "We're learning that there are a lot of psychological problems that our patients face that we aren't set to handle."
Since the program began in April, it has enrolled 14 patients. To refer a patient to the SAYAC Program, call 650-498-9404 or email email@example.com. The program is currently accepting young patients being treated for sarcomas and leukemia at both hospitals.