Improving HIV pre-exposure prophylaxis (PrEP) adherence and retention in care: Recommendation development from a national PrEP programme

IntroductionHIV pre-exposure prophylaxis (PrEP) is a key component of HIV combination prevention. Effective prevention needs people to adhere to PrEP during periods of risk and remain in care. However, relevant models of care are under-researched. Using data from the first two years of Scotland’s PrEP programme, we explored barriers and facilitators to PrEP adherence and retention in care and systematically developed evidence-based, theoretically-informed recommendations to enhance future adherence and retention.MethodsWe conducted semi-structured interviews and focus groups (09/2018-07/2019) with geographically and demographically diverse patients who were either using/declined/stopped or had been assessed as ineligible for PrEP (n=39), healthcare professionals involved in PrEP provision (n= 54), non-governmental organisation service users (n=9) and staff (n=15) across Scotland. We used thematic analysis to map key barriers and facilitators to priority areas that could enhance adherence and retention in care. Next, we used analytic tools from implementation science (Theoretical Domains Framework, Intervention Functions, Behaviour Change Technique Taxonomy, APEASE criteria) and expert opinion to systematically generate recommendations to enhance future PrEP adherence and retention in care.ResultsBarriers and facilitators to adherence and retention in care were diverse and multi-layered. Barriers included perceived complexity of event-based dosing, the tendency for users to stop PrEP before seeking professional support, troublesome side-effects, limited flexibility in the settings, timings, and nature of appointments for follow up, enduring PrEP-related stigma and emerging stigmas around not using PrEP. Facilitators included flexible appointment scheduling, reminders, and processes to follow up non-attenders. We generated 25 wide-ranging but specific recommendations for key stakeholders, for example, emphasising the benefits of PrEP reviews and providing appointments flexibly within individualised PrEP care; using clinic systems to remind/recall PrEP users for review; supporting PrEP conversations among sexual partners; clear guidance on event-based dosing; encouraging/commitment to good PrEP citizenship; and detailed discussion on managing side-effects and care/coping planning activities.ConclusionsPrEP adherence and retention in care is challenging for many people. Such challenges reduce the benefits of PrEP at individual and population levels. Our findings identify and provide solutions to where and how collaborative interventions across public health, clinical, and community practice could address these challenges.