Why do HIV PrEP Patients Become Lost-to-Care and How Can We Improve PrEP Retention?

*Corresponding author: Sahana Jayaraman*, Linden Lalley-Chareczko, Sarah Williams, Devon Clark, Caitlin Conyngham and Helen C. Koenig

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original research



To assess reasons for patients being lost-to-care (LTC) at an urban health center (Philadelphia, PA, USA) that provides access to oral tenofovir/emtricitabine(TDF/FTC) as pre- exposure prophylaxis(PrEP) to patients ages 13-30 years through a drop-in model of care.


Ninety-nine patients were identified as LTC based on not visiting a clinician in ≄4 months during the period April 2016-January 2017. Patients were contacted by phone/email to participate in a voluntary telephone survey regarding reasons for falling out of care. Results were analyzed descriptively.


Of the 99 patients preliminarily identified as LTC, 19 completed the survey. Reason(s) for becoming LTC included: 47%(9) relocation, 11%(2) transportation difficulties to/from clinic, 26%(5) financial/insurance problems, 5%(1) perceived medication side effects, 16%(3) trouble remembering to attend appointments regularly, 5%(1) difficulty with daily medication adherence, and 0% social stigma. Furthermore, 21%(4) remain at high-risk of HIV/STI acquisition after becoming LTC. The main study limitations are selection bias and small sample size, where the small sample size did not allow for statistical significance.


While the major cause for becoming LTC was relocation, these findings suggest 37% of LTC incidences may be preventable with additional/up-front support. Because 21% of LTC patients remain at high-risk of HIV/STI acquisition, proactive re-engagement initiatives are potentially useful.


HIV/AIDS; Pre-exposure prophylaxis; Retention and care; Socioeconomic factors; Adolescent Health; Lesbian/Gay/Bisexual/Transgender Persons.