“I just decided to stop:” Understanding PrEP discontinuation among individuals initiating PrEP in HIV care centers in Kenya and its implications for a public health approach to prevention

BACKGROUND:

Although PrEP discontinuation rates in clinical trials and demonstration projects have been well characterized, little is known about it in routine public health settings. Understanding discontinuation decisions in non-study settings is important for calibrating expectations of PrEP persistence in national programs and strengthening public health approaches to HIV prevention.

In-depth interviews were conducted with 47 individuals who initiated PrEP at 25 different HIV comprehensive care centers (CCCs) in Central and Western Kenya, whose clinic record indicated had not returned for scheduled refills. We explored decisions around initiation, discontinuation, and restarting PrEP. An inductive, thematic, content-analytic approach was used to analyze the data.

Clients initiated PrEP because they had one or more sexual partners who were either HIV positive or of unknown status. Many discontinued PrEP when their perceived risk decreased (i.e. because those relationships ended, because they were living apart from a primary partner, or when a known HIV positive partner became virally suppressed). These participants expressed willingness to re-start PrEP if their partnership situation changed. Others reported discontinuation due to side effects (dizziness, nausea, weight gain) or found daily pill-taking too burdensome, and preferred condoms for prevention purposes. Some participants (mostly women) discontinued PrEP due to their partner’s insistence and wished for additional PrEP education and counselling to foster partner support. Though relatively few participants identified facility level factors as primary reasons for discontinuing PrEP, many described stigma-related discomfort with accessing PrEP at CCCs, inconvenient clinic location and/or operating hours, long wait times, and short refill dates as barriers. Most individuals reported multiple reasons for deciding to discontinue PrEP and did not inform health facilities of their decision to stop.

Clients make intentional decisions to discontinue PrEP as they weigh different prevention options and navigate fluid and sometimes challenging relationships. Many clients will decide to discontinue PrEP when perceiving themselves to be at reduced risk and PrEP counseling approaches must include provisions for addressing ‘seasonal risk.’ PrEP will not be the right prevention method for everyone. However, expanding PrEP access points and increasing sex-positive messaging may facilitate PrEP being a better option for many.