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Youth living with HIV (YLWHIV) have an increased cancer risk. Our objective is to describe the prevalence of medical record (MR) reported suspected cancers in a contemporary cohort of YLWHIV in Uganda that was assembled through MR reviews of patients 10 to 24 years old across 35 Ugandan HIV care health facilities. Clinical data were abstracted to identify suspected cancer cases and information about HIV care. Among 3728 YLWHIV, we identified eight suspected cancer cases. The most common suspected types were Kaposi sarcoma (n=4) followed by lymphoma (n=3). Challenges encountered in data abstraction were missing data for several variables and confirmatory cancer diagnostic information. In follow-up of suspected cases referred for diagnosis at the Uganda Cancer Institute (UCI), none had diagnosis records in UCI files. In addition, ∼18% of patients (n=686) were lost-to-follow-up (LTF) defined as not having returned to the clinic in ≥183 days and three patients died from presumed Kaposi sarcoma. Although our results suggest that cancer is rare in YLWHIV, the possibility that the cancer burden is higher cannot be excluded due to incomplete information in MRs and high LTF rates. Further, our study raises concern that patients referred for diagnosis are not accessing potential life-saving care.

Pediatric, adolescent, and young adult cancer in an HIV-infected rural sub-Saharan African population