Half of people living with HIV feel unheard by healthcare providers despite high trust, according to a study which included respondents from Ireland.
This finding emerged from interim data from the third wave of the global Positive Perspectives (PP3) study of people living with HIV.
The study was carried out by ViiV Healthcare, the global specialist HIV company majority owned by GSK, with Pfizer and Shionogi as shareholders.
It showed that while a high proportion of individuals trusted their healthcare provider, a communications gap existed. Many indicated that they sometimes felt unheard by their healthcare provider and did not make decisions together about their current antiretroviral (ART) regimen. Those who were satisfied with their ART regimen were less likely to intentionally skip doses and more likely to report good overall health outcomes.
Stephen O’Hare, Executive Director, HIV Ireland, said, “The study findings highlight an important, but often overlooked aspect of the treatment conversation – that living with HIV involves more than just viral suppression. Effective intervention requires truly listening to the patient, valuing their choices and integrating their voices into the decision-making process. Providing a space for patients to express how they feel, encouraging questions and taking time to properly explain treatment options will complement decisions based on sound medical judgment and advances in science. Viewing patients as active participants in their own care will foster improved adherence, increased confidence, and better health outcomes overall.”
Clarence Soliman, Advanced Nurse Practitioner, St. Vincent’s University Hospital, said, “As a nurse working closely with people living with HIV every day, I see firsthand how vital it is to build strong, trusting relationships with our patients. The findings from this study highlight the significant impact of joint decision-making on treatment satisfaction and overall health. When patients feel heard and involved in decisions about their antiretroviral therapy, they are more likely to stick to their treatment plan and experience better health outcomes. Listening to patients’ concerns and preferences is essential; it not only fosters trust but also empowers them to take an active role in their healthcare journey. By prioritising patient-provider communication and collaboration we can improve satisfaction with care and support our patients in leading healthier, more fulfilling lives.”
The Positive Perspectives studies have been co-created with community representatives from around the world to capture and amplify the experiences of people living with HIV. This interim analysis from PP3 included 698 people across 16 countries, and once complete will be one of the largest surveys of people living with HIV, including more than 3000 participants across 29 countries.
While 80% (n=558/698) of those surveyed reported high trust in their HCPs, 47.5% (n=331/698) indicated that they sometimes felt unheard by their HCP and 39.7% (n=277/698) said they did not make joint decision about their current ART regimen. Those that jointly made decisions about ART with their provider were more likely to be satisfied with their treatment and care. These findings highlight the need to enhance patient-provider interactions and encourage collaborative decision-making.
Higher treatment satisfaction was associated with good mental, physical, sexual, and overall health for people with HIV: Those who were satisfied with their ART regimen were less likely to intentionally skip doses and more likely to report good overall health outcomes. However, while the majority of individuals said they were satisfied with their ART regimen, many indicated concerns around the potential long-term effects of ART (53%, 374/698), treatment-related weight gain (48.6%, 339/698) and the unwanted reminder of HIV with daily medication (43.2%, 301/698). These data highlight the importance of taking patient preferences and concerns into account when selecting ART regimens and the continuing need for reassessment.
While 93.7% (n=654/698) of those surveyed reported being aware of U=U (when someone with an undetectable HIV viral load on treatment cannot transmit HIV through sex), only 58.1% (380/654) of those indicated that they believed in U=U and 31.1% (203/654) were unable to explain U=U to others. Belief in U=U was associated with positive psychosocial outcomes such as enjoyment of sex and the perception of reduced internal and external stigma. These data highlight the continued need for wider dissemination of the U=U message through trusted sources of information.
