The DanceBlue Kentucky Children's Hospital Hematology/Oncology Clinic is taking a new approach to caring for patients ages 15 to 29 through the Adolescent and Young Adult (AYA) Program.
"It's a population that's underserved and has unique needs," said Dr. John D'Orazio, interim chief of Pediatric Hematology & Oncology.
How adolescent and young adult cancer patients are different
Pediatric patients, infants to age 14, require resources not only for their treatment but also dedicated staff members to help with communicating with the patients' schools as well as a number of other resources to assist them and their families. Adult patients' needs include financial assistance, transport to and from appointments, and an advocate to work with insurance companies. The needs of adolescents and young adults fall somewhere in between.
Patients in high school and college struggle with the isolation that comes with a cancer diagnosis. Just as they move to become more independent, they lose their autonomy. School work and social lives suffer. For young adults just starting their first jobs, they can get overwhelmed by billing and insurance companies.
“Patients diagnosed as adolescents and young adults have better outcomes if treated at a facility that specializes in pediatric and adult oncology," said Dr. Caryn Sorge, medical director for the AYA program. "By offering the opportunity to enroll in clinical trials, we are pushing science forward to learn about not only the biology of this populations cancer but also how to improve outcomes in these patients.”
Caring for both medical and social needs
The AYA program has a dedicated social worker and school intervention specialist as well as dietary and pain management support. In addition to in-clinic services, the staff will host quarterly dinners for patients and families to educate them on topics such as financial planning, insurance, healthy eating and how to work with colleges regarding course work and financial aid.
"As an example, say a patient has just started college and paid for the semester, but because of their illness, they can't attend their classes," said Dianna Holtzhauer, advanced registered nurse practitioner for the AYA program. "They need an advocate, someone who knows the university system. Our school intervention specialist is familiar with education systems and can work within the school as an advocate for the patient in many different areas of concern, such as with coursework, financial aid or deferment, if needed. The goal of the school intervention specialist is to provide a path allowing the patient to stay on track to achieve their academic goals. These are the types of things a young patient may not have the resources or the energy to address."
The same resources will be available to patients whether they receive their outpatient chemotherapy in the DanceBlue Clinic or Markey Cancer Center, where adult cancer patients are treated. Depending on their cancer diagnosis, they may be treated with pediatric therapy protocols. Those diagnoses include sarcomas, lymphoma, and testicular and ovarian cancers. For cancers that tend to affect adults, such as colorectal, breast or thyroid cancers, patients will be treated with adult cancer protocols. Each case will be evaluated by the AYA oncology team to determine what course of treatment would best benefit the patient.
Learn more about the AYA program, the DanceBlue Clinic and patient referrals.