Barriers to using HIV pre-exposure prophylaxis (PrEP) and sexual behaviour after stopping PrEP: a cross-sectional study in Germany

BACKGROUND: Persistence of individuals at risk of HIV with Pre-Exposure Prophylaxis (PrEP) is critical for its impact on the HIV epidemic. We analysed factors associated with stopping PrEP, barriers that may deter people from continuing PrEP and investigated sexual behaviour after stopping PrEP. METHODS: Current and former PrEP users in Germany were recruited to complete an anonymous online survey on PrEP use and sexual behaviour. Participants were recruited through dating apps, a PrEP community website, anonymous testing sites and peers. The results were analysed using descriptive methods and logistic regression. RESULTS: We recruited 4848 current and 609 former PrEP users in two study waves (July–October 2018, April–June 2019). Former PrEP users were more likely 18–29 years old than current users (adjusted OR = 1.6, 95% confidence interval (CI) 1.1–2.3). Moreover, they were more often unhappy with their sex life, which was more pronounced in former daily PrEP users (aOR = 4.5, 95% CI 2.9–7.1) compared to former on-demand users (aOR = 1.8, 95% CI 1.1–2.9, p(interaction) = 0.005). The most common reason for stopping PrEP was a reduced need for PrEP (49.1%). However, 31.4% of former users identified logistic reasons and 17.5% stopped due to side effects. Former PrEP users using PrEP < 3 months were more likely to stop PrEP due to concerns over long-term side effects (32.0% vs. 22.5%, p = 0.015) and not wanting to take a chemical substance (33.2% vs. 24.0%, p = 0.020) compared to former PrEP users who used PrEP for longer. After stopping PrEP, 18.7% of former PrEP users indicated inconsistent condom use while having ≥4 sex partners within the previous 6 months. Former PrEP users with many partners and inconsistent condom use more often indicated logistic reasons for stopping (46.5% vs. 27.9%, p < 0.001) than did other former PrEP users. CONCLUSIONS: To maximise persistence with PrEP we need to develop strategies for younger PrEP users, reduce logistic barriers to access PrEP, and to develop effective communication on side-effect management. Moreover, prevention strategies for people stopping PrEP are required, since some remain at high risk for HIV. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12889-021-10174-4.