Telehealth for HIV care and management among people living with HIV in Australia: results from an online survey

Study design

We conducted a cross-sectional anonymous online survey using Qualtrics software (Provo, UT, USA) among people living with HIV (PLHIV) in Australia between November 2021 and December 2022. This survey contained a maximum of 37 closed-response questions (using branching logic. Therefore, some questions were not shown to participants if, based on their previous responses, they did not apply) and three open-response questions, which were co-designed by sexual health researchers, clinicians, and community members. The survey took approximately 10 min to complete.

Setting

The Melbourne Sexual Health Centre (MSHC) was the coordinating clinic and the only participating clinic that had clinicians recruit participants. Clinicians recruited participants by asking patients (either during in-person or telehealth consultations) if they would like to complete the survey. If a patient indicated interest in participating the clinicians then sent an SMS to them with the link to the survey. The survey was also advertised via posters and postcards containing a QR code to the survey which were distributed on social media and at six participating clinics: (1) MSHC; (2) Tasmanian Statewide Health Service; (3) Sydney Sexual Health Centre; (4) Royal Adelaide Hospital; (5) Gold Coast Sexual Health Service; and (6) a high case load General Practice in Victoria. Additionally, this survey was also disseminated by Living Positive Victoria, a community-based organisation for people living with HIV in Victoria, through postcards and posters as well as emailed newsletters to their members.

Participants

Participants were eligible for this survey if they were aged 18 years or above, and living with HIV in Australia. Participants did not have to have a previous experience of using telehealth as the survey also aimed to examine preferences for future HIV routine care with regards to utilising telehealth and it is possible participants who had not previously used telehealth would want this option in the future.

Variables

The survey collected demographic details including gender identity, sex at birth, language spoken at home, and age group. It also included telehealth experiences such as reasons for use, number of appointments, how participants rated the experience, most liked and disliked aspects, and preferences for the future consultations. The survey also asked about disruptions and changes to routine standard of care following the implementation of COVID-19 restrictions, including changes or delays in blood tests and receiving medications.

Statistical methods and data analysis

Descriptive statistics were calculated using Stata (ver. 17; College Station, TX, USA). Free text data were analysed using a conventional content analysis approach, which is appropriate when the study aim is to describe a phenomena, in this case, participants’ experiences and suggestions for telehealth.¹⁵ To immerse themselves in the data, authors JMA and TP read and re-read the free text responses in their entirety. Subsequently, JMA created an initial set of codes inductively from the data. JMA and TP met to review and revise the coding framework together and the final coding structure was used to inform the results of the study.

Ethics approval

This study was approved by the Alfred Hospital Ethics Committee, Melbourne, Australia (560/21).

Participants

The survey was answered by 100 people, of whom one was excluded for not giving consent, four for not living with HIV, and another six for reporting unknown HIV status. Thus, there were 89 participants included in the final analysis.

Demographic data

Most participants were male (80/89, 89.9%), followed by female (8/89, 9%) and non-binary people (1/89, 1.1%) (Table 1). Participants were predominantly between 36 and 55 years of age (49/89, 55.1%), and English was their primary language spoken at home (74/89, 84.1%).

The majority of participants had been living with HIV for 5 years or more (68/89, 76.4%). A few had been diagnosed since 2020 (8/89, 9%), and half of them were between the ages of 18 and 35 years (4/89, 4.5%). None reported delaying testing due to the COVID-19 pandemic.

Most participants were recruited from the MSHC (46/89, 51.6%), followed by LPV (23/89, 25.8%). Most received routine HIV care from sexual health clinics (63/89, 70.8%) and were concomitantly screened for sexually transmitted infections (STIs) at their routine appointments (51/89, 57.3%).

More than three-quarters of the participants (69/89, 77.5%) had experienced telehealth during the COVID-19 pandemic period. The main form of care was exclusively by telephone (50/89, 56.2%), followed by both telephone and videoconference (15/89, 16.9%).

Telehealth experiences

Most participants who used telehealth utilised it for the routine monitoring of HIV care (58/69, 84.1%), followed by prescription requests (28/69, 40.6%) (Table 2). The median number of telehealth consultations among those who had experienced telehealth since the start of the COVID-19 pandemic for HIV care was three (IQR: 2–4). Among those with experiences of telehealth, nearly half were not given the option to have an in-person consultation for at least one of their telehealth consultations (32/69, 46.4%). No changes in blood work for HIV care were experienced by the majority of the participants (41/69, 59.4%).

The majority of participants (47/69, 68.1%) who had telehealth experience indicated they were able to raise concerns with their doctor during their telehealth consultation. However, 15.9% of participants (n = 11/69) felt it was more difficult to raise concerns during their telehealth consultation. The most common reason participants felt they could not raise concerns during telehealth consultations was feeling flustered by not seeing their doctors in-person (7/69, 10.1%) followed by lack of privacy, lack of time, and because they could not see or read the clinician’s facial expressions (2/69, 2.9% each).

Participants ranked the most favourable aspect of telehealth as the convenience of not leaving home or work for the consultation (50/69, 72.5%), less travel time (48/69, 69.6%), and avoiding contact with other people (30/69, 43.5%; Table 3). In contrast, participants ranked their least favourable aspects of telehealth as not being screened for STIs or have a physical examination at the same time (29/69, 42%), feeling it was an impersonal experience (20/69, 29%), and that it was more difficult to discuss health concerns (18/69, 26.1%; Table 3).

Participants reported that due to having a telehealth consultation, they had delayed asymptomatic STIs screening (20/69, 29%) and influenza vaccination (12/69, 17.4%).

Medications during COVID-19

Nearly half of participants (40/89, 44.9%) were offered the delivery of their HIV medication to their home during the COVID-19 pandemic, but of these participants, less than half used this service (19/40, 47.5%). Participants received medicine delivered to their home mainly due to time-saving (7/17, 41.2%), followed by restricted movement due to lockdown rules (5/17, 29.4%). Among the 21 participants who had the offer of having their HIV medication mailed but declined this service, the most common reasons for declining included receiving the medication faster by picking it up from the clinic or pharmacy (10/21; 47.6%), worries about delays in receiving the medication by post (7/21; 33.3%), the convenience of picking up the medication when they are attending the clinic anyway (6/21; 28.6%) and concerns about confidentiality with mailed prescriptions (5/21; 23.8%).

In-person consultations during COVID-19

Most participants (64/89, 71.9%) had an in-person appointment during the COVID-19 pandemic, 20/89 (22.5%) of whom had only in-person consultations during the study period. Almost a quarter (20/89, 22.5%) of those who had an in-person consultation had experienced delays in their appointment times.

Preferences and suggestions from free text response

Among those participants with an experience of telehealth during COVID-19, there were 40.6% (n = 28/69) who rated their telehealth experiences as similar to in-person consultations, and almost one-third (20/69, 29%) of the participants thought that telehealth was better. Almost one-quarter (16/69, 23.2%) of the participants who had telehealth experience rated it worse than in-person consultations (Table 2).

All participants were asked about how they would like their HIV follow-up care to be in the future; most preferred a mix of telehealth and in-person appointments for their care (40/89, 44.9%; Table 4). However, nearly one-quarter (20/89, 22.5%) preferred in-person consultations exclusively, and only a small proportion (11/89, 12.4%) preferred telehealth consultations exclusively.

Participants were asked to suggest improvements for telehealth for use in their future HIV care and 29/89 (32.6%) participants responded (Table 5).

While most valued the convenience of telehealth, in particular the shorter consultation time (for discussion of specific issues), and elimination of the need to travel, improvements were suggested in the areas of alignment between telehealth appointments and in-person visits for pathology testing, ensuring the frequency of screening for STIs was maintained, and providing the option of longer appointments. Many reiterated their preference for continued hybrid care, most of whom wanted a system of predominately telehealth appointments while occasionally having in-person consultations. Many stressed the importance of seeing their clinicians in-person occasionally to maintain their relationship. One participant was concerned about data security and suggested privacy and patient data handling should be more transparent.