Real World Data Identifies Care Needs in Adolescent and Young Adult Patients with Lymphoma: A Matched Cohort Study

Adolescent and young adult (AYA) cancer patients have unique nononcologic challenges compared to adult and pediatric counterparts. National guidelines highlight unmet care needs in mental, physical, and sexual/reproductive health domains. We present a single institution retrospective matched cohort study exploring the feasibility of using electronic medical record (EMR) to identify nononcologic domains correlating to unmet care needs in AYA patients with lymphoma compared with matched controls.

AYA patients with lymphoma from 2014 to 2020 were compared to age/sex matched controls without cancer. The groups were queried using a novel EMR assessment prior to diagnosis and during the 1-year period after diagnosis. Prevalence and incidence of nononcologic care domains were compared.

Patients with lymphoma had higher rates of chronic pain and analgesic use (15% vs. 1%, p < 0.0001, and 60.84% vs. 29.33% p < 0.0001) prior to diagnosis and more fertility preservation appointments compared to controls. One year after diagnosis, there were higher rates of anxiety (29% vs. 21%, p < 0.017), antidepressant use (26% vs. 14%, p < 0.0003), opioid abuse (4% vs. 0.69%, p < 0.007), chronic pain (15% vs. 1%, p < 0.0001), analgesic use (80% vs. 13%, p < 0.0001), influenza vaccination (16% vs. 0.69% p < 0.0001), and reproductive endocrinology and infertility appointments (21.7% vs. 1%, p < 0.0001) in the lymphoma group.

EMR can feasibly track institutional-level nononcologic care domains in AYA patients to frame development of institution-specific interventional studies to address care gaps and design prospective patient surveys to correlate to patient-identified concerns.