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

Purpose

We 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.

Methods

We 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.

Results

The 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).

Conclusions

These 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.

Key Words: Comparative Study, HIV Infections, HIV Serodiagnosis, Reproducibility of Results, Surveillance

Selected Abbreviations and Acronyms: AIDS, acquired immune deficiency syndrome, CFAR, Center for AIDS Research, CSDS, Clinical and Socio-Demographic Survey, HARS, HIV/AIDS Reporting System, HIV, human immunodeficiency virus, IDU, injection drug use, MSM, men who have sex with men, NC, North Carolina, NC DHHS, North Carolina Department of Health and Human Services, UNC, University of North Carolina, UNC-ID, University of North Carolina at Chapel Hill Infectious Disease Clinic