Introduction: Health care delivery programs specific to the needs of adolescents and young adults ages 15-39 (AYAs) with cancer are increasingly being developed in the United States. Guidelines primarily focused on supportive care, fertility and therapeutic regimen for a few cancer types are now established, but best practice metrics and outcome standards are lacking. Malignant hematologic conditions are common in AYAs and challenges of care delivery for this disparate group are accentuated by fragmentation of management within the health system, between pediatric and medical oncology and between academic and community sites. Optimal place of care between academic and community systems is not established, but most of AYAs are diagnosed and cared for in the community. We describe our experience with treating AYAs with acute leukemia and lymphoma in a multi-disciplinary, community-based AYA program, with a focus on metrics and outcomes.
Methods: Medical record review under an IRB approved retrospective study was conducted of all AYAs seen by a dedicated AYA Cancer Care team at a single institution in a Southeast United States community. Descriptive analysis was used for demographic data, including age, cancer type, insurance status, gender and ethnicity. Basic statistical analysis was used for guideline and pre-established metrics, including therapy regimens; completion of therapy; study accrual; fertility documentation, referral and intervention; sedated procedures. Kaplan-Meier estimates were applied for newly diagnosed patients for event free and overall survival for each cancer type in newly diagnosed population.
Results: Bon Secours St. Francis AYA Cancer Care is an immersive program where a pediatric oncologist is employed by a non-academic, medical oncology, hospital-owned practice that sees 1500 new cancer patients annually and is located in Greenville, SC. Since 2012, AYA Cancer Care has seen 107 patients newly diagnosed, relapsed or in survivorship, 58 (54%) of whom with a diagnosis of acute leukemia or lymphoma. Median age was 25 (range 15-39), and 43%, 31% and 31% were female, minority and uninsured at time of first visit, respectively. Metrics and outcomes for acute lymphoblastic leukemia, acute myelogenous leukemia, Hodgkin lymphoma, and non-Hodgkin lymphoma are shown in Table 1.
Despite a high rate of no insurance at diagnosis, all patients received guideline-driven therapy, most were cared for by the AYA team and 65% of LPs/BMAs were sedated with MAC. All newly diagnosed ALL patients except 1 were treated with pediatric-inspired therapy. Males were more likely to be referred to fertility specialists, but females were nearly twice as likely to have intervention in the form of chemoprophylaxis. No Children's Oncology Group trials for indicated cancer types were available via CTSU during the study period, and 31% of patients were enrolled on therapeutic trial, 19% sponsored by biopharmaceutical companies and 12% sponsored by the NCI. EFS and OS for newly diagnosed patients are as follows: AML, 90%/90% (median f/u 40 weeks); ALL, 29%/71% (3.2 yrs); HL, 89%/100% (4.5 yrs); NHL, 89%/100% (5 yrs).
Conclusions: We report a high rate of guideline-driven care for AYAs with acute leukemia and lymphoma seen by a multidisciplinary team solely focused on AYA care delivery within a community practice setting. Metrics are derived from best practices from both pediatric (pediatric inspired therapy in AML, ALL; sedation for procedures) and adult (ABVD for HL, NCI and pharma-sponsored trials) oncology paradigms. Immersive AYA programs in non-academic settings are potentially effective models of reducing health disparities and improving outcomes in AYAs.
Crosswell:Seattle Genetics: Other: stock ownership in Seattle Genetics.
Asterisk with author names denotes non-ASH members.