Using Real World Data (RWD) to Identify Care Needs in an Adolescent and Young Adult (AYA) Lymphoma Population: A Match Cohort Study
Abstract
Adolescent and young adult (AYA) patients with malignancies are a unique population within oncology with differences in survivorship outcomes as compared to adult and pediatric counterparts. The National Comprehensive Cancer Network (NCCN) identified eight critical domains in AYA care: mental health, cognitive function, physical exercise, fatigue, immunizations/infection prevention, pain, sexual function and sleep disorders. However, it can be difficult to establish a clinical benchmark of these domains at an institutional level without time-consuming chart review. With the advent of real-world data generated from the electronic medical record (EMR), feasible large scale data assessment can be used to identify care needs and direct future prospective studies and interventions.
Here we demonstrate the feasibility of a match cohort study using EMR comparing metrics in the above NCCN domains in AYA lymphoma patients within the University of Rochester Medical Center. We identified 172 AYA lymphoma patients diagnosed between 2013 and 2019 and compared them to 516 controls over that time period using 3:1 control matching, both at time of diagnosis and one year post-diagnosis. Controls were identified within the EMR with exclusion criteria of no cancer diagnoses and fewer than an average of ten medical visits per year over the study period to control for other chronic disorders.
Demographic characteristics for both groups were matched for age at diagnosis date, sex, and race. The…
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