Background: Because many people who inject drugs (PWID) are at high risk of hepatitis C virus (HCV) and have poor access to medical care, many HCV-infected PWID remain undiagnosed and unaccounted for in surveillance systems. Syringe exchange programs (SEPs) are an under-utilized resource for collecting information missing from surveillance systems. Partnerships with public health agencies represent a potentially innovative approach to studying the HCV epidemic for PWID. The goal of this study was to characterize the HCV care continuum for a cohort of PWID using database linkages.
Methods: Data needed to describe the HCV care continuum for 235 PWID were collected from surveillance data provided by the Wisconsin Division of Public Health, a computerized survey administered by SEP staff, and a follow-up interview delivered by academic research staff. When possible, we attempted to confirm each individual’s position in the HCV care continuum with at least 2 of the 3 data sources.
Results: Participants ranged in age from 18–63 years, 60% self-identified as non-Hispanic white, and 77% were male. Overall, we determined that 208 (89%) of the 235 participants had ever been tested for HCV and 72 (31%) had ever tested positive. Of those 72, 46 (64%) had been linked to care, 14 (19%) received pre-treatment evaluation, and 4 (6%) reported initiating treatment. Confirmation by at least 2 data sources ranged from 14–57% of cases for each stage of HCV care.
Conclusion: Available data sources show a large degree of variability when used to characterize the HCV care continuum. New strategies to enhance the quality and completeness of these data sources could substantially improve ongoing efforts to monitor the HCV care continuum among PWID.