Ghosting on PrEP Care: Understanding why some PrEP clinic clients don’t persist in care
Abstract
Pre-exposure prophylaxis (PrEP) for HIV is an effective tool for preventing HIV infection. For those at risk of HIV, retention in PrEP care is critical for continued adherence. Reasons for loss from care are multifaceted, and understanding what they are can help inform service improvements. This project explored why individuals who initiated PrEP at FCBOH stopped returning to FCBOH for PrEP care.
From October through December 2023, we interviewed 184 individuals by phone who had initiated PrEP at FCBOH between January 2019 – February 2023 but had not returned to the PrEP clinic for at least 6 months (i.e., two periods of anticipated follow-up visits per CDC PrEP guidelines). Following identity verification and consent, questions were asked pertaining to PrEP use, reasons for not returning to the clinic, and satisfaction with clinic services.
Of 184 individuals contacted, 82 (44.6%) were reached. Sixty-nine (37.5%) agreed to participate. Of respondents, 44 (63.8%) reported remaining on PrEP but had changed providers. Twenty-five (36.2%) had stopped PrEP. Of those who stopped, top reasons for discontinuing were no longer feeling at risk for HIV (8, 32%), having or fearing side effects (3, 12%), and cost or insurance barriers (4, 15.4%). Two patients reported difficulty accessing the clinic due to logistical issues. Eight individuals who had stopped PrEP expressed interest in resuming and were redirected to the FCBOH PrEP coordinator. Respondents were generally satisfied with FCBOH clinic services, but 41 (59.4%) suggested improvements such as better communication from the clinic (20, 29%), text/email updates about appointments (10, 14.5%), an ability to make appointments and check-in online (9, 13.0%) and extended clinic hours (3, 4.3%).
In order to improve PrEP services, it is important to understand why clients who start PrEP may discontinue. For FCBOH, rectifiable reasons pertaining primarily to improvements in communications were identified.
Keywords
PrEP, adherence, Fulton County, HIV, access, satisfaction
Ghosting on PrEP Care: Understanding why some PrEP clinic clients don’t persist in care
Pre-exposure prophylaxis (PrEP) for HIV is an effective tool for preventing HIV infection. For those at risk of HIV, retention in PrEP care is critical for continued adherence. Reasons for loss from care are multifaceted, and understanding what they are can help inform service improvements. This project explored why individuals who initiated PrEP at FCBOH stopped returning to FCBOH for PrEP care.
From October through December 2023, we interviewed 184 individuals by phone who had initiated PrEP at FCBOH between January 2019 – February 2023 but had not returned to the PrEP clinic for at least 6 months (i.e., two periods of anticipated follow-up visits per CDC PrEP guidelines). Following identity verification and consent, questions were asked pertaining to PrEP use, reasons for not returning to the clinic, and satisfaction with clinic services.
Of 184 individuals contacted, 82 (44.6%) were reached. Sixty-nine (37.5%) agreed to participate. Of respondents, 44 (63.8%) reported remaining on PrEP but had changed providers. Twenty-five (36.2%) had stopped PrEP. Of those who stopped, top reasons for discontinuing were no longer feeling at risk for HIV (8, 32%), having or fearing side effects (3, 12%), and cost or insurance barriers (4, 15.4%). Two patients reported difficulty accessing the clinic due to logistical issues. Eight individuals who had stopped PrEP expressed interest in resuming and were redirected to the FCBOH PrEP coordinator. Respondents were generally satisfied with FCBOH clinic services, but 41 (59.4%) suggested improvements such as better communication from the clinic (20, 29%), text/email updates about appointments (10, 14.5%), an ability to make appointments and check-in online (9, 13.0%) and extended clinic hours (3, 4.3%).
In order to improve PrEP services, it is important to understand why clients who start PrEP may discontinue. For FCBOH, rectifiable reasons pertaining primarily to improvements in communications were identified.
