Program expands access to guideline-concordant cancer care for adolescents, young adults
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Key takeaways:
- Adolescents and young adults with cancer face unique challenges.
- UNC’s AYA cancer program is a consult-based referral intervention designed to meet these patients’ needs.
A program designed to better meet the needs of adolescents and young adults with cancer helped ensure more of them had access to guideline-concordant care, according to study findings.
Jacob N. Stein, MD, MPH, assistant professor of oncology at The University of North Carolina at Chapel Hill, and colleagues retrospectively reviewed electronic health record and state cancer registry data to identify 4,016 adolescents and young adults (AYA) who received cancer care at UNC between 2014 and 2022.
Researchers compared sociodemographic and clinical criteria between individuals who came in contact with the institution’s AYA cancer program and those who did not. Investigators also assessed outcomes of care utilization, complications and use of supportive care to assess correlations between outcomes and AYA program contact.
Researchers evaluated 4,016 patients, 670 (16.6%) of whom had contact with the AYA program. Those who engaged with the program tended to be younger at diagnosis, were more likely to be Black, and had higher rates of metastatic disease or hematologic malignancy.
Weighted model analyses showed patients who engaged with the AYA program more often received guideline-concordant care, including clinical trial enrollment, fertility counseling and palliative care. They also more often participated in advanced care planning.
Over the course of the study, the program’s reach extended from 6% of AYAs treated at the institution to more than 25%.
“Despite all the growth, there’s still a need for more,” Stein, the program’s AYA oncology liaison, told Healio. “The next big goal for us, programmatically, is to start reaching beyond just our cancer center. We have affiliate sites throughout the state that provide community-based oncology, and we are beginning to partner with these sites to figure out how we can extend AYA care beyond those who come to the comprehensive cancer center.”
Healio spoke with Stein about the origins of the program, the success observed so far and plans for expansion.
Healio: What are some of the unique needs and challenges AYA patients with cancer face?
Stein: Receiving a cancer diagnosis is disruptive for anyone, but it is uniquely disruptive for AYAs due to their life stage. They are trying to navigate so many changes in their lives — independence and moving away from home, development of the identity and the self, a sense of autonomy. AYAs might be trying to start a career, a family or an education, and a cancer diagnosis brings up a few particular issues.
Fertility preservation is a major one. Many cancer treatments can affect the ability to have children. Figuring out how to add fertility preservation on top of cancer treatment is just one example of the challenges AYAs face.
Healio: How did UNC’s AYA program come about?
Stein: The program started in 2014. Sophie Steiner, a teenager who had leukemia and received care at our center, saw how the modern cancer care system does not take very good care of AYAs given the unique needs they face. She charged her parents with trying to do better, and they started a nonprofit foundation called Be Loud! Sophie Foundation. They collaborated with UNC to start this AYA cancer program. It started with one person a decade ago, and now we have about 10 people on the team.
Healio: What does the program entail?
Stein: It is a consult-based referral intervention. Patients who have particular needs or concerns can reach out to us — but more often their providers reach out to us. We connect with the patient and address their needs. It’s very much a patient-centered approach. One of our social workers or nurse practitioners meets with the patient, gets a sense of what their needs are and then collaborates with them to produce a plan of care.
Healio: What services does the program connect patients to?
Stein: A wide range, all based on the individual patient’s needs. Some patients want fertility services. Psychosocial care is huge and provides support regarding a cancer diagnosis at this critical life stage. Palliative care is needed for young adults going through intensive care or facing life-limiting illnesses. Parenting with cancer is a concern for some patients — we have a program at our center where AYAs can meet with a psychologist and a lawyer, and together they provide support in navigating some of the issues the patient is facing.
Healio: What benefits did your study identify among patients who engaged with the AYA program?
Stein: The findings I presented at last fall’s ASCO Quality Care Symposium were the first cut of data from our program evaluation. So far, we see much higher clinical trial enrollment with patients who have contact with our program. That is because we talk about clinical trials and offer to connect patients who might be eligible. Use of fertility preservation services was much higher, as well as palliative care referrals and contact with palliative care. Advanced care planning documentation was higher. Whatever their wishes are, the team is documenting them so that they get care that is consistent with their goals.
Healio: What do you think could be the long-term implications of this program?
Stein: We would love to see if young adults engaged in our program are able to stay on treatment for longer, or be more likely to complete their recommended course of treatment. We’d like to look at patterns of acute care utilization and see if being connected with our program reduces some of this utilization. Those are future things we will analyze from the data we already have.
Healio: What is next as far as expanding or evolving the program?
Stein: We are working on expanding mental health care for AYAs at our institution and are also looking to add an AYA navigator position. But really, it’s simply continuing to deliver this high level of supportive care, and making sure it gets to as many young people as we possibly can.
References:
- Stein JN. Influence of an AYA cancer program on cancer care delivery. Presented at: ASCO Quality Care Symposium; Sept. 27-28; 2024; San Francisco.
- Stein JN. JCO Oncol Pract. 2024; doi:10.1200/OP.2024.20.10_suppl.4.
For more information:
Jacob N. Stein, MD, can be reached at Jacob.stein@unc.edu.
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