We collected online responses from both PLHIV and HHP on their attitudes and perceptions towards ATI in HIV cure-focused research. While several studies have explored PLHIV motivations to enrol in clinical studies related to HIV cure (3, 4, 11, 12), quantitative analyses assessing HIV clinician attitudes towards ATI in the context of cure-related research have not been performed. Furthermore, we surveyed HIV clinicians, including primary care physicians who prescribe ART in the community, who were not necessarily involved in such research, to gain a broader sense of general perceptions on ATI from providers.
ATI is a critical component of HIV cure-focused clinical trials. PLHIV form strong therapeutic relationships with their providers so decisions about trial participation, particularly those that involve an alteration in their routine ART, will always need to involve their HHP. It is likely that PLHIV will follow the recommendation of their clinician about whether to enrol in such trials. Therefore, it is critical to understand the perspective of HHP providers at the same time as PLHIV attitudes towards ATI trials. We found a clear difference in awareness of ATI and optimism for an HIV cure between PLHIV and HHP.
A high level of participation in HIV research was noted amongst surveyed PLHIV, and a small number had previously enrolled in an HIV cure-focused study. In spite of scarce firsthand experience with HIV cure-related research; there was optimism among PLHIV that a cure would be achieved within the next 10 years. Importantly, this reflects current perceptions of HIV cure research among PLHIV, where previous qualitative studies have found mixed attitudes ranging from optimism to fear and disengagement (12, 13). The observed lower optimism for HIV among clinicians may also expound reluctance to enrol patients in their care into a HIV cure-focused study. This may be explained by the adherence to universal recommendations for continuous ART, after The Strategies for Management of Antiretroviral Therapy (SMART) study (and other CD4 directed ART trials of the time) demonstrated an increased risk of serious opportunistic infections and all-cause mortality (1, 14). The level of optimism in PLHIV and its disparity from HHP will be an important response to assess and compare over time and compare with that of HHPs, in particular as media reporting of HIV cure science over time may have given the impression that a cure is imminently achievable (8).
Motivations for PLHIV to enrol in HIV cure research involving ATI were mostly altruistic, with an emphasis on helping others above themselves. This has been demonstrated in multiple other surveys of PLHIV who have already participated in cure research (11), and those who are yet to enrol (3–5, 12, 15). This is not so clearly apparent in other medical research fields, including paediatrics, where motivations include accessing unaffordable treatment and “enhanced care” (16–18) above altruistic reasons. This may be particularly evident in countries without a universal healthcare model. This was also noted in participants in cancer studies where only between 25–47% of surveyed participants stated that they enrolled for altruistic reasons (19, 20). PLHIV have historically worked closely with scientists and researchers, advocating heavily for investing in research, particularly in the early ART studies (21). This altruism of participating in research can also be seen as a form of activism.
The surveys were accessed online and only available in English. This limited access to potential respondents who reside in low- or middle-income countries (LMIC) where internet access is not universal and English is not the first language. As such, there was a bias in both the PLHIV and HHP surveys to respondents from Western and high-income countries, where much of the current HIV cure-related research is being conducted (1). It is important for both clinical and social studies to be performed in LMIC where the greatest burden of infection is centred, and where many PLHIV have limited access to ART (22).
As the surveys were hosted on a website dedicated to HIV cure, there may be a bias towards PLHIV and HHP who are already interested or involved in HIV cure research. Furthermore, the surveys did not give participants the opportunity to expand on answers in free text comments. Thus the true motivations of PLHIV to enrol in such studies or detailed concerns from physicians around trial participation may not have been elucidated. While qualitative surveys have the benefit of exploring these issues in more detail, our quantitative study allowed for a large sample of participants to be surveyed. We have identified important themes for further investigation such as potential caution practiced by providers around HIV cure studies.
Both surveyed PLHIV and HHP were interested in HIV cure science. This positive perception is encouraging for investigators planning such studies and highlights the importance of engaging PLHIV and HHP to improve trial understanding and aid enrolment. Further research should be conducted in these populations to monitor how these attitudes may shift over time. Finally, as an important point of access for information for PLHIV, it is essential that up-to-date and accurate data from cure-focused studies are disseminated to all prescribers of HIV therapy, not only to clinicians who are already very interested in this research. Developing and broadening this interest in clinicians may assist in clarifying concerns and anxieties related to ATI, which will have a flow on effect to PLHIV as potential trial participants.