Are National Cancer Institute Cancer Centers (NCI-CC) providing adolescents and young adults (AYA) with cancer focused clinical services? A national survey.

Abstract

1534 Background: AYA patients with cancer have inferior outcomes compared to their pediatric and adult counterparts. The NCI recommends they be treated by AYA focused healthcare professionals within an AYA oncology program. This survey captures the current landscape of AYA oncology care in the United States. Methods: An online survey was sent to 272 cancer centers in September 2020, in coordination with Teen Cancer America and included all clinically designated NCI-CC. The survey asked about the presence of an AYA program, types of patients, dedicated resources, clinical space, type of providers, associated support services, educational efforts, importance of AYA oncology care, and how well these services are provided. Results: In total, we received 93 responses, a 34% response rate, including 50 NCI centers, a 72% response rate. Only half (49%) of NCI-CC reported having an AYA program, and 70% were started in the past 5 years. One-third (32%) of centers reported plans to start an AYA program. Most programs included patient ages from ≥15 (56%) to ≤39 (63%) with a variety of cancers – most commonly hematologic (49%) and sarcoma (49%) and least commonly lung (36%), breast (38%), and head and neck cancer (38%). AYA programs are generally embedded in both adult and pediatric oncology services (63%). On average, cancer centers reported seeing 25-50 new AYA patients/month and 100-200 follow-up visits/month. Few programs reported a dedicated inpatient space (4%) or outpatient space (9%). Most NCI-CC have supportive services available for all oncology patients, but fewer of these services were dedicated specifically to AYA patients: navigators (92% vs. 71%), social work (98% vs. 57%), psycho-oncology (96% vs. 54%), dietician (98% vs. 24%), physical therapy (98% vs. 18%), chaplaincy (98% vs. 18%), and child life (83% vs. 26%). Other services available to the AYA population included sexual health (62%), academic support (62%), and career resources (36%). A minority of centers (30%) provided AYA training to their staff. A majority of NCI-CC felt AYA programs were important-very important (60%). They reported providing good-excellent overall AYA care (59%), but this dropped to 22% for sexual health and education of staff, which was relatively consistent across centers (Table). Conclusions: This survey is the first ever national survey to assess AYA oncology programs. Despite greater emphasis on the AYA cancer population, only half of NCI-CC report having a dedicated program, and areas of improvement include education of staff and sexual health services for patients. Self-report of providing good to excellent AYA care in specific areas.[Table: see text]