Understanding quality of life for people living with HIV
There was a time when HIV care focused solely on suppressing the virus. As HIV care has evolved, the focus has moved away from surviving HIV to living and ageing well with HIV, with improved quality of life (QoL) being the desired goal.
To help support people living with HIV to live long, happy, healthy lives, it’s important to understand the challenges people face and how they impact their quality of life.
Positive Perspectives is a global study that shines light on the experiences and aspirations of 2,389 people living with HIV aged 18–84 from 25 countries including Ireland (n=50). It investigates how people living with HIV rate their health and how living with HIV impacts their lives and affects their outlook for the future. The study also examines their experiences with antiretrovial therapy (ART) and the interactions and relationships people living with HIV have with healthcare professionals.
*Defined in Positive Perspectives as taking five or more pills a day or taking medicines for five or more health conditions.
QoL and the ‘fourth 90’
Thanks to innovations in antiretroviral treatment, HIV is now a long-term, treatable health condition.
While there is still more work to be done to ensure universal access to ART, significant progress has been made in reaching the UNAIDS 90–90–90 targets set for 2020:
Improving long-term QoL is becoming a critical priority in the care of people living with HIV, a target that has become known as the ‘fourth 90’.
What does this mean for people living with HIV?
The results from Positive Perspectives confirm the importance of a holistic approach to HIV care.
Empowered people living with HIV who are involved in open and active dialogue and joint decision-making with their healthcare providers were more likely to report undetectable viral load and, more importantly, improved aspects of their QoL.
Taking multiple medications
Positive Perspectives data show that many people living with HIV in the study reported polypharmacy* or were taking other medicines in addition to their ART.
After controlling for the presence of comorbidities**, Positive Perspectives results also show that polypharmacy is strongly associated with poorer QoL.1
were concerned about taking more medicines as they grow older<sup>1</sup>
In Ireland, 57% of men and 45% of women worry about having to taking more and more medications as they get older.<sup>7</sup>
were worried about long-term effects of HIV medicines<sup>1</sup>
In Ireland, 57% men and 48% of women worry about the long-term side effects of their HIV medication.<sup>7</sup>
Open communication with healthcare teams, peers and community organisations enables people living with HIV to feel more comfortable discussing their treatment desires and concerns.
would like to be more involved in decisions about their HIV treatment<sup>2</sup>
In Ireland, 76% of men and 93% of women would like to be more involved when it comes to decisions about their HIV treatment.<sup>7</sup>
Approximately 1/3 were uncomfortable discussing their concerns about ART side-effects with their healthcare providers<sup>2</sup>
In Ireland, 52% of men and 76% of women were either comfortable or very comfortable raising concerns about long-term side effects with their HIV medication with their healthcare provider.<sup>7</sup>
In Ireland, 24% of men and 21% of women reported that they were not told about U=U by their healthcare providers.7
Healthcare providers now have further incentive to inform people living with HIV about U=U; Positive Perspectives data show a direct correlation of improved health outcomes among those made aware of U=U by their healthcare providers.
Just over one-third of people living with HIV in the study reported they were not told about U=U by their healthcare providers<sup>3</sup>
of people who reported being informed about U=U by their healthcare providers reported optimal treatment adherence<sup>3</sup>
In Ireland, 86% of Women Living with HIV agree that there is room for improving the way their HIV is managed.7
Overall, women living with HIV in the study reported significantly poorer health outcomes compared with men living with HIV, and reported less viral suppression and more treatment-related side effects.4
of women living with HIV were more likely than men living with HIV (41% 609/1,486) to report suboptimal health<sup>4</sup>
Despite over two-thirds desiring greater involvement in their care, a significantly higher proportion of women living with HIV were uncomfortable discussing treatment issues with healthcare providers<sup>4</sup>
Open and ongoing communication with healthcare providers is important to help address the evolving needs of people living with HIV as they grow older.
Almost one-quarter of people living with HIV aged 50 and over reported poor physical, mental, sexual and overall health<sup>5</sup>
reported barriers to raising concerns with their healthcare providers<sup>6</sup>