Variability of the Date of HIV Diagnosis: A Comparison of Self-Report, Medical Record, and HIV/AIDS Surveillance Data

PurposeWe sought to describe and quantify differences among the year of first positive HIV test from patient report, the medical record, and HIV/AIDS surveillance data.MethodsWe merged two clinic-based studies with overlapping HIV-infected participant populations in North Carolina with the HIV/AIDS Reporting System (HARS) and examined the first positive HIV test year from patient report, the medical record, and HARS. Matches were considered the same year of diagnosis.ResultsThe self-reported year of diagnosis had high agreement with the medical record (67% matched exactly and 19% differed by 1 year, weighted kappa = 0.85), although there were wide 95% limits of agreement (–4.0 earlier to 3.9 years later). On average, the dates of diagnosis from patient report and the medical record were earlier than HARS with wide 95% limits of agreement (7.5 years earlier to 6.0 years later for patient report vs. HARS, 7.7 years earlier to 6.0 years later for medical record vs. HARS).ConclusionsThese measures could not reliably be used interchangeably as there was wide variability in both directions. Although collection of data from patient report or existing sources is convenient, cost effective, and efficient, there is significant variability between sources.