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BACKGROUND: With the advent of “treatment as prevention,” ensuring retention of HIV/AIDS patients in treatment has become a public health prevention priority. The HIV/AIDS surveillance database is the primary way that public health can monitor this important metric. The objective of this analysis was to evaluate the completeness of HIV/AIDS case reporting and the ability of the surveillance database to accurately represent the continuum of care.
METHODS: Laboratory testing data are routinely collected and inputted into the Enhanced HIV/AIDS Reporting System (eHARS). Data on patient access to medication is collected in the AIDS Drug Assistance Program (ADAP) database. These two databases were electronically linked. Retention-in-care for 2012 was defined in eHARS based on the patient having a CD4 count or viral load test within the past 12 months. Retention-in-care in the ADAP database was defined as having received medication assistance anytime during 2012. The proportion of cases retained in care was recalculated and compared to the initial proportion using the McNemar’s Exact and mid-p tests.
RESULTS: Initially, 1586 (58%) of the reported 2,734 persons living with HIV/AIDS (PLWH) in Utah met the definition of retention-in-care in the eHARS database. A total of 660 PLWH were identified in the ADAP database as having received treatment in 2012. After data linkage, 87(13%) of the persons in the ADAP data set did not have evidence of recent laboratory testing data in eHARS and would have been classified as not in care if eHARS were used alone. After the addition of these persons, the proportion of HIV/AIDS cases identified as retained in care increased significantly (62% of cases retained-in-care, overall).
CONCLUSIONS: eHARS data missed some cases that were documented in ADAP as having received medication. This could be due to incomplete laboratory reporting to eHARS and difficulty in correctly posting laboratory results to cases in eHARS. eHARS may also entirely miss some cases who recently moved into the state and are receiving medication, but may not have yet seen a provider. Monitoring retention-in-care accurately in eHARS will need additional work to address these issues.