Did the COVID-19 pandemic affect medicine-related support for people living with HIV in the United Kingdom? – a cross-sectional survey

Abstract

Abstract Introduction In 2019, there were 105,200 people living with HIV (PLWH) in the UK, most of whom (98%) were engaged in care and on antiretroviral medicines (ARVs). Globally, the COVID-19 pandemic was predicted to interrupt the HIV care continuum.[1] In England, early phases of the pandemic revealed a shift to online, or remote HIV service delivery and a decline in sexual health service provision generally.[2] Aim To investigate PLWH’s perceptions of the effects of the COVID-19 pandemic on their medicine-related support (MRS). Methods Institutional ethics approval was obtained to promote an online survey (1/09/2021 to 31/01/2023) among UK residents. Eligible participants were PLWH, aged 18 years or over, using ARVs and ≥1 non-ARV. Snowball sampling was used to recruit participants via social media. The survey asked participants to report their sources of medicine-related support and whether they experienced changes to how they obtained their medicines during the pandemic. An open-ended question was also asked to allow participants to report any other medicine-related issues experienced during the pandemic. The survey link was shared with HIV-related charities and their memberships. Descriptive statistics and thematic analysis were used for quantitative and free-text quotes respectively. Results One hundred and seventy-three participants who were eligible consented. Ninety-five participants provided free-text quotes. The mean age was 48.7 (SD±12.5) years and 50.5% (n=51/101) were aged ≥50 years. The majority were male (77.5%, n=79/102), white (86.1%, n=87/101), and gay/lesbian (60.8%, n=62/102), whilst 52.9% were employed (n=54/102). Approximately 1 in 5 (16%, n=8/50) of younger PLWH reported changes to their MRS, whilst 9.8% (n=5/51) of older PLWH, aged 50+, felt their MRS changed. Source of MRS: Most PLWH continued to use their specialist healthcare professionals for MRS and perceived no change in its availability due to COVID-19. Within primary care services, more participants reported using their general practitioner for MRS compared to their community pharmacist (12.5%, n=17/136 and 2.9%, n=4/136, respectively). Frequency of appointments and perceptions around person-centred care: Some reported that they had received more attention from healthcare professionals whilst others noted that after the first lockdown fewer, busier staff led to a less person-centred service. Mode of MRS: Whilst the majority of clinics moved to remote appointments, for many PLWH this was perceived as desirable particularly for those who preferred the convenience of remote appointments or were concerned about leaving their home due to being categorised in highest-risk patient groups. Ten participants stated that, due to COVID-19, they now get their medicines delivered to their homes instead of collecting them as previously from the local pharmacy or their specialist HIV clinic. One participant wrote “I had longer periods between blood tests and telephone consultations. I prefer face to face”, with another 52-year-old female stating that “Personally, don’t ever want to replace face to face with remote again”. Access to medicines: Only 8 (8.4%, n=8/95) reported changes to how they accessed their antiretroviral medicines. Two participants reported interruptions to treatment; “I had a shortage of medication. When I phoned my hospital to ask for a new prescription, they couldn’t give me one unless I came in physically. This was impossible for me during the first few months of lockdown” (male, aged 30). Conclusion While most PLWH did not perceive changes to their MRS due to the COVID-19 pandemic, a minority experienced treatment interruptions as revealed by this UK-wide survey. Patient preferences should be considered when delivering medicine-related consultations for PLWH. Future research is needed to explore clinicians’ perspectives and how to ensure continuity of HIV care during crises.