By Roger Pebody
Data from an international survey of people living with HIV in high- and upper-middle-income countries show that only two-thirds have discussed 'undetectable equals untransmittable' (U=U) with their doctor. Discussing U=U was significantly associated with favorable health outcomes, such as improved adherence and greater comfort sharing their HIV status, Chinyere Okoli and colleagues report in Sexually Transmitted Infections.
“Discussing U=U in clinical settings is vital because patients perceive information they hear directly from their healthcare providers as more credible,” the researchers write. “Given that physicians are likely to be the first professionals a newly diagnosed person will turn to for advice about their new health condition, it is essential to assess the extent to which healthcare professionals share information about U=U with their patients.”
A total of 2,389 adults living with HIV and taking antiretroviral medication participated in the survey, which was sponsored by ViiV Healthcare. The market research firm Ipsos Healthcare recruited participants primarily from community HIV groups (58%), individuals who had previously participated in HIV market research (26%), and people in contact with local ViiV offices (8.5%). The sampling was designed to achieve adequate representation in three groups: women (29%), people aged 50 and over (29%), and people diagnosed within the previous two years (23%). However, those participating in the study are not necessarily representative of the broader population of people living with HIV; individuals with better access to information were more likely to be recruited.
The survey was conducted in 25 countries across Europe (47% of respondents), North America (22%), Asia (9.6%), Latin America (9.3%), South Africa (7.5%), and Australia (5.0%). Most participants were between thirty and forty years old, and three-quarters had an education beyond high school.
Two-thirds (66.5%) of participants reported that “My provider has told me that 'undetectable equals untransmittable'.” Another 21.1% knew that “my HIV medication prevents me from transmitting HIV to other people,” but had learned this from another source. 12.3% of respondents were completely unaware of U=U.
The proportion who had the conversation did not vary according to age or year of HIV diagnosis. People with a secondary education appeared more likely to have discussed U=U with a provider (73%) than those with a university education (63%). Gay and bisexual men were more likely to have discussed U=U (71%) than heterosexual men (58%) or women (65%). People who had casual sex partners were more aware (75%) than others.
In four Asian countries included (China, Japan, South Korea, and Taiwan), only 51% of people had discussed U=U with their healthcare provider. Similarly, in Latin America (Argentina, Brazil, Chile, and Mexico), only 61% of people had had the discussion. The countries with the highest scores were Switzerland (87%), Austria (84%), and Australia (80%).
Discussions between physicians and patients about U=U correlated with other indicators of the healthcare relationship, such as agreement with the statements “I have been given enough information to participate in decisions about my HIV treatment,” “My provider asks me if I have any concerns about the HIV medication I am currently taking,” and “My provider informs me about new HIV treatment options that are available.” In each case, about seven out of ten people who had discussed U=U agreed with the statement, while about four out of ten people who had not had the discussion agreed.
There were also strong associations between discussing U=U with a healthcare provider and several other favorable health outcomes. While learning about U=U through other sources was also associated with good outcomes, the associations were not as strong.
Because the survey was cross-sectional, it focuses on associations rather than causal effects. For example, among those who were unaware of U=U, only 56% experienced viral suppression, whereas among those who had discussed U=U with their healthcare provider, 77% experienced viral suppression. It could be that healthcare providers discussed U=U with their patients, which then motivated them to adhere to treatment. Similarly, the relationship could be reversed: some providers may only choose to discuss U=U once a patient's viral load has become undetectable.
Suboptimal adherence was reported by 35% who were unaware of U=U, 29% who had heard about it from other sources, and 20% who had discussed it with their healthcare provider.
While only 36% of people who were unaware of U=U would feel comfortable discussing concerns about HIV transmission with their healthcare provider, this was the case for 55% and 66% of the other groups, respectively.
Participants were asked to rate their health on a five-point scale. It was rated as 'good' or 'very good' by 45% who were unfamiliar with U=U, 55% who were familiar with it from other sources, and 61% who had discussed U=U with their healthcare provider. Similar patterns were observed when specifically asked about physical health, mental health, and sexual health.
People who had discussed U=U were more open about their HIV status. Among those who were unaware of U=U, 20% said they felt comfortable sharing their HIV status, compared to 27% of those who knew from other sources and 33% of those who had discussed U=U with their doctor or nurse. Sixty-seven percent of those unaware of U=U reported having hidden or disguised their HIV medication in recent months, compared to 61% of those who had learned about it and 55% of those who discussed it with their provider.
In a separate commentary, Dr. Sarah Calabrese and Professor Ken Mayer argue that stigmatizing attitudes among some healthcare providers toward people with HIV can stifle patient-provider communication about U=U. Social groups and behaviors associated with HIV transmission are already stigmatized; individuals may be stereotyped as irresponsible or at risk, and providers may feel less comfortable discussing sex with some minority groups. Stigma can be implicit and can manifest as reasoned decision-making.
They request that universal patient education (U=U) be recommended in clinical guidelines, incorporating U=U into clinical education, creating concrete tools that could facilitate conversations, and expanding public awareness through public health messages. References
Okoli C et al. Undetectable equals untransmittable (U=U): awareness and associations with health outcomes among people living with HIV in 25 countries. Sexually Transmitted Infections, online ahead of print, July 30, 2020.
Calabrese SK and Mayer KH. Stigma impedes HIV prevention by suppressing patient-provider communication about U=U. Journal of the International AIDS Society