A European survey of more than 1,900 people living with HIV has found a gap between interest in long-acting treatment options and the number of people discussing them with their healthcare providers.

The Ask Us Europe survey, conducted across 18 European countries, found that 81% of respondents recalled having a treatment review, but only 45% of those who had discussed treatment optimisation said they had discussed long-acting injectable cabotegravir and rilpivirine.

The findings also showed differences in treatment discussions between demographic groups, highlighting potential inequalities in access to information about long-acting HIV treatment.

The survey was led by an academic team in London and co-produced with people living with HIV. It was supported by ViiV Healthcare and the results were presented at the 26th International AIDS Conference in Rio de Janeiro, Brazil.

Interest in long-acting HIV treatment options

The survey found strong interest in future long-acting HIV treatment options, with 93% of respondents expressing interest in at least one potential long-acting treatment modality.

Injectable treatments given two or three times a year were the most popular option, with 77% of respondents expressing interest. Monthly oral treatments were selected by 68%, while 56% expressed interest in weekly oral options.

Implants and patches were less popular, with 40% and 34% of respondents expressing interest respectively.

Interest was particularly high among people who had previously received long-acting injectable cabotegravir and rilpivirine. Among respondents who had received the treatment, 89% expressed interest in future injectables dosed two or three times a year, compared with 20% who expressed interest in weekly oral treatment.

The findings suggest that people living with HIV have varied preferences around how and how often they receive treatment, reinforcing the importance of discussing available and emerging options as part of routine care.

However, 19% of all respondents said they did not recall ever having a treatment review discussion with their healthcare provider.

Among those who had discussed treatment optimisation, only 45% recalled discussing long-acting injectable cabotegravir and rilpivirine.

Professor Chloe Orkin, director of the SHARE Research Collaborative at Queen Mary University of London and principal investigator of the Ask Us Europe study, said: “These findings show that many people who could benefit from long-acting treatment are not having these conversations with their healthcare providers, and eligibility alone does not guarantee access.”

Orkin added that proactive dialogue and shared decision-making were needed to ensure people could access care suited to their needs and preferences.

Treatment conversations vary between groups

The survey’s equity analysis found that treatment discussions also varied according to factors including age, ethnicity, education and time since diagnosis.

Respondents aged over 55 were less likely to report discussing long-acting injectable cabotegravir and rilpivirine with their healthcare provider than those under 55.

The research also examined the experiences of transgender, non-binary and gender-diverse people living with HIV, finding higher levels of complex social support needs alongside greater interest in long-acting treatment.

Among the 162 transgender, non-binary and gender-diverse respondents, 60% reported complex support needs, compared with 47% of cisgender respondents. These needs included access to domestic violence services, drug and alcohol support, foodbanks and peer support.

The group also reported higher levels of unmet support needs, while missed doses were more frequently reported among transgender, non-binary and gender-diverse respondents.

Among those not receiving long-acting cabotegravir and rilpivirine, 65% expressed interest in the treatment. The survey found that interest was linked primarily to concerns about adherence, accidental disclosure of HIV status and taking multiple medicines.

Community-led research highlights need for shared decisions

The findings highlight the potential role of community-led research in identifying gaps between the treatments available and the conversations taking place in healthcare settings.

Jean van Wyk, chief medical officer at ViiV Healthcare, said: “The Ask Us Europe study shows why community-led research is essential to improving care.”

Van Wyk added that the findings highlighted a gap between treatment options people wanted and the conversations they were having with clinicians, and said open dialogue and shared decision-making should become part of everyday HIV care.

The survey suggests that improving access to long-acting HIV treatment may require more than developing new medicines. Ensuring people are aware of available options and have opportunities to discuss them with healthcare professionals could also be important, particularly among groups reporting additional social or clinical support needs.

The researchers said the findings reinforce the importance of offering a range of treatment options that reflect the different preferences and circumstances of people living with HIV.