Audit of patient retention in pre-exposure prophylaxis (PrEP) services in an integrated sexual reproductive health service setting

Abstract

Pre-exposure prophylaxis (PrEP) for HIV in Wales was launched in July 2017. We set up a PrEP service delivered via our integrated sexual reproductive health service in Aneurin Bevan University Health Board (ABUHB), south east Wales. Public Health Wales (PHW) data show a 22% ‘lost to follow-up’ rate amongst Welsh PrEP patients. Over 18 months, 278 patients booked into ABUHB PrEP clinics. Of these, 275 were men who have sex with men (MSM). One hundred and ninety-three patients commenced PrEP, 5 were diagnosed with HIV at baseline, 42 did not attend their first appointment. The remainder declined PrEP. Of those commenced on PrEP, 51.7% had reduced clinic attendances; all were MSM. Patients with reduced attendances were more likely to be younger (mean age 33 vs. 37 years), reside outside ABUHB catchment area (56.4% vs. 49.6%) and have mental health issues (28.6% vs. 18.8%), but were less likely to disclose substance misuse (24.2% vs. 27.1%) than those attending in line with operational guidance. Of the 63 patients who stopped attending the PrEP clinic, 32.3% (21) had documented reasons, the most common being reduced self-perceived risk. This is the first evaluation of reasons why patients stop attending as well as risk factors associated with those lost to follow-up in PrEP services in Wales.

Keywords

Europe men prevention human immunodeficiency virus viral disease high-risk behavior

Background

Pre-exposure prophylaxis (PrEP) for HIV has been shown to reduce HIV transmission.^1,2 There is limited evidence regarding the optimal way to deliver PrEP through pre-existing UK services. PrEP in the form of Truvada (or generic equivalent) was launched in Wales in July 2017. PrEP is free of charge for anyone at risk living in Wales. Access to PrEP varies across the UK; in Scotland, PrEP is free to all those at risk who live in Scotland, and Northern Ireland has a two-year PrEP project. In England, PrEP is available to those enrolled in the IMPACT study.³ We set up a PrEP service to be delivered via our integrated sexual reproductive health service which is a Level 3 pre-existing fully-integrated contraceptive and sexually transmitted infection (STI) Sexual and Reproductive Health (SRH) open access drop-in service, which follows a hub and spoke model over a wide geographical area covering urban and rural communities in Aneurin Bevan University Health Board (ABUHB), south east Wales. In 2016, there were 141 new cases of HIV diagnosed in Wales.⁴ Rates of STI diagnoses are higher than the national Welsh average in all but one of the local authorities served by ABUHB.⁵ We set up the PrEP service in line with Welsh operational guidance in conjunction with Public Health Wales (PHW) which recommends three-monthly follow-ups for screening in line with BHIVA PrEP UK guidance.⁶^,⁷ Patients could self-refer or be referred to the PrEP clinic from open access SRH clinics. Since launch, data from PHW show a 22% lost to follow-up rate amongst Welsh PrEP patients.⁸ In this article, we audit PrEP delivery in ABUHB, focusing on patient retention rates over the first 18 months.

Methods

We set up the PrEP service in line with Welsh operational guidance in conjunction with PHW.⁶ Daily PrEP was commenced with follow-up at one month, then three-monthly booked appointments in PrEP clinics, with text reminders sent for appointments. PrEP was prescribed daily in line with licensing, the option of event-based dosing was discussed at the initial PrEP appointment with all patients. STI screening for Chlamydia and gonorrhoea testing (including oral and rectal tests) and serological testing for HIV, syphilis and hepatitis was offered each visit. Data were collected over the first 18 months of PrEP delivery from July 2017 to January 2019 from our electronic patient record (EPR) system, Idox, including patient numbers, regimen (daily or event-based), adherence, any reported online purchases of PrEP or record of PrEP obtained from other services, booked appointments, prescription numbers and lengths, age, health board of residence, side effects, substance misuse, mental health issues, physical illness, new diagnoses of STIs (defined as gonorrhoea, Chlamydia or syphilis) and reported reasons for disengagement. All cases of syphilis were incident cases identified as new diagnosis following a previously negative test. Data were analysed using Chi-squared and unpaired t-test.

The reduced attendance group were defined as follows:

Lost to follow-up: A patient who has not attended the PrEP clinic for a time period at least twice that of their prescription length, immediately prior to 31 January 2019.

Prolonged appointment interval: A patient who has attended the PrEP clinic for a prescription, 30 days or more after their prescription should run out.

Both: Patients who fulfil both of the above criteria, i.e. patients with prolonged appointment interval and subsequent loss to follow-up to PrEP service.

We were unable to find guidance on auditable outcome targets for the retention of patients within PrEP services but aim to assess rates so far achieved.

Results

Between July 2017 and January 2019, 278 patients booked into PrEP clinics. Of those, 275 were men who have sex with men (MSM) and three were female, two of whom were transgender. One hundred and ninety-three patients commenced PrEP, 5 were diagnosed with HIV at baseline and 42 did not attend their first appointment. All those started on PrEP were MSM, identifying as male, who had an HIV-negative test on the day of starting PrEP, who had another HIV-negative test in the preceding year and reported condomless intercourse in the past three months and affirmed likelihood of condomless intercourse in the next three months. The remainder declined PrEP. Mean age on commencing PrEP was 35 (range 17 to 70 years). Of 193 patients commenced on PrEP, 16 patients were excluded as there had been insufficient time for them to exhibit reduced attendance and 1 transferred to another centre. Of the 176 remaining patients commenced on PrEP, all were MSM, all identified as male, 42 (24%) reported mental health issues and 45 (26%) reported substance misuse. There was no reported event-based dosing.

Figure 1 shows the proportions of the remaining 176 patients commenced on PrEP who fell into the different attendance categories; 51.7% (91) had reduced attendance, all of whom were MSM, 13.6% (24) of the total had at least one prolonged follow-up interval, 35.8% (63) were lost to follow-up and 2.3% (4) had a prolonged follow-up interval and subsequently were lost to follow-up. During follow-up consultation, 9.8% (9) patients reported never having started their PrEP despite having received their prescription and a further 14.3% (13) reported taking PrEP less than daily despite aiming for a once daily PrEP regimen.

Figure 1.

Appointment attendance of those commenced on PrEP.

Of the 63 patients who stopped attending the PrEP clinic, 32.3% (21) had a reason documented in their notes. Figure 2 shows the reasons for why patients stopped attending.

Figure 2.

Reasons patients stopped attending PrEP clinic.

Two of the six patients reporting a new relationship as a reason for stopping PrEP have since been diagnosed with an STI.

In the reduced PrEP attendance group, there were 48 new STI diagnoses in 30 patients as compared to those who attend PrEP clinics regularly in whom there were 54 new STI diagnoses in 31 patients. There have been no new HIV diagnoses in either group. Three (12.5%) patients with prolonged appointment intervals and one (25%) patient with both prolonged appointment intervals and subsequent loss to follow-up to the PrEP service supplemented their supply with bought PrEP.

Patients in the reduced attendance category were more likely to be younger (mean age 33 vs. 37), reside outside ABUHB catchment (56.4% vs. 49.6%), have mental health issues (28.6% vs. 18.8%) but less likely to disclose substance misuse (24.2% vs. 27.1%) or have a new STI diagnosed (33% vs. 36.5%) than those who attend in line with operational guidance. However, none of these differences were statistically significant (p-values ≥ 0.1).

Discussion

This audit presents the first evaluation of reasons patients stop attending NHS PrEP clinics as well as risk factors associated with those lost to follow-up to PrEP services in Wales. Our results show that over half the cohort prescribed daily PrEP did not attend the clinic in accordance with operational guidelines.

Data were collected using ABUHB’s EPR. It is unknown whether patients accessed other services or online PrEP; we can only infer reduced PrEP tablet adherence for those who did not re-attend. Reduced PrEP adherence has been associated with reduced efficacy.⁹ Although no event-based dosing was reported and PrEP was prescribed daily, we cannot rule out that event-based dosing may have occurred, and this may have contributed to reduced attendance or prolonged follow-up interval.

Previous studies have shown that patients who perceive themselves to be at high risk of HIV transmission are more likely to adhere to their medication.¹⁰^,¹¹ Our data reflect this by the increased prevalence of STIs in the adherent cohort compared to the reduced adherence cohort and our data show that reduced self-perceived risk is the most frequently documented reason for discontinuing PrEP. However, although some of the reasons for self-perceived reduced risk given by patients correlated with a potential reduction in risk (e.g. partner with an undetectable HIV viral load, oral sex only), of the six patients reporting a new relationship leading to self-perceived reduced risk, two were subsequently diagnosed with a new STI. This raises concerns that self-perception of risk may not concur with actual reduced risk.

Strategies for improving patient retention in PrEP services could include targeted PrEP promotion during attendances to non-PrEP clinics, text reminders to encourage restarting PrEP, development of a system that flags patient’s overdue appointments or sends automatic text reminders and booking PrEP appointment for patients within consultations instead of at clinic reception. Patients who are younger, attend from further away or have mental health and/or substance misuse issues may benefit from further social and psychological support.^12–14

As PrEP is rolled out more widely across the UK, further cohesive discussion will be required on methods to improve patient retention in PrEP clinics in Integrated Sexual Health service settings.

Footnotes

Acknowledgments

We would like to thank all staff and colleagues at Directorate SRH Aneurin Bevan University Health Board, ABUHB Laboratories and PHW for all their support and hard work, in particular Irene Parker, Amanda Blackler, Amy Harris and Sharon Taylor.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

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