The goal for a good quality of life
Antiretroviral therapy (ART) has dramatically altered the natural history of HIV: people with HIV now have longer lives than ever before.1,2 However, new challenges in HIV care have arisen alongside this greater longevity.2,3,4 People with HIV face physical, mental, psychosocial and sexual concerns in relation to their HIV care, and contend with higher risks of polypharmacy and comorbidities.3–7 These concerns can substantially impact the perceived level of well-being and health of people with HIV—their health-related quality of life (HRQoL). For people with HIV, HRQoL encompasses a range of components, including physical, social, functional and psychological factors.3,6,8,9
Now is the time to embrace a person-centred model of care for people with HIV that supports them to thrive with a good HRQoL.8,9 This forms the basis of the 'fourth 90', a HIV care target that extends the continuum-of-services paradigm and aims to improve HRQoL.8,9
The fourth 90 is an extension of the UNAIDS ’90-90-90’ campaign, a series of ambitious targets to help end the AIDS epidemic.8,9
Clinical Insights to Improving HRQoL
Understanding the relationship between the care experiences of people with HIV and self-reported outcomes for HRQoL is an important aspect of identifying how HRQoL can be improved.3,5
Positive Perspectives Wave 2 confirmed the importance of a holistic approach to HIV care, including the importance of engagement between people with HIV and healthcare professionals (HCP) for improving HRQoL.3
Open and active dialogue between HCPs and people with HIV
Impact of polypharmacy
Treatment challenges and aspirations
HIV in under-represented groups
OPEN AND ACTIVE DIALOGUE BETWEEN PEOPLE WITH HIV AND HCPs
Open and active dialogue with HCPs can help people with HIV to identify concerns around their health goals and care.3,7 In Positive Perspectives Wave 2, up to 77% (1,842/2,389) of people with HIV reported more than one issue they felt uncomfortable discussing with their HCP.10
Open conversations with HCPs help people with HIV to feel empowered, educated and informed about their care. Additionally, they support people with HIV to engage with their care and could help people with HIV to thrive with good HRQoL.3,5,9,11,12 Data from Positive Perspectives Wave 2 highlighted the link between self-reported HCP engagement and improved health outcomes:3,4
High self-reported HCP engagement among people with HIV is associated with optimal self-reported overall health and treatment satisfaction3
How could open and active dialogue with HCPs help people with HIV to thrive?
UNDETECTABLE = UNTRANSMITTABLE (U=U)
The landscape of HIV care entered a new paradigm within the last decade.13,14 The
Undetectable = Untransmittable public health campaign launched in 2016, and four ground-breaking studies published between 2016 and 2019, communicated that people with HIV who keep their viral load at an undetectable level by consistently taking HIV medications will not pass HIV to others through sex.13,14
In Australia, the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) has produced guidance for HCPs, which recommends all people with HIV should be advised of U=U by their HCP and informed of the following:14
- People who keep their viral load at an undetectable level by consistently taking HIV medications will not pass HIV to others through sex.
- Newly diagnosed or previously diagnosed people with HIV not currently taking ART should be encouraged to think about starting ART as soon as possible.
- HCPs should provide particular details about U=U to people with HIV as relevant and appropriate.
- People with HIV should be counselled about research on U=U.
- All sexually active people with HIV and their partners should be encouraged to consistently get tested for bacterial STIs.
For full recommendations, please refer to U=U: ASHM Guidance for Healthcare Professionals, October 2020, available here
Recent data from the Australian cohort (N=120) of the Positive Perspectives Wave 2 study showed that HCPs have been communicating U=U at a high level compared to the global cohort (N=2,389):3,5
There is room for improvement and a renewed cause for HCPs to continue communicating the U=U message.5,15 People with HIV in Positive Perspectives 2 who were notified by their HCP about U=U reported favourable health outcomes compared to people with HIV who learnt about U=U elsewhere, or did not know about the message at all.15
IMPACT OF POLYPHARMACY
Advances in HIV treatment, such as ART, have enabled people with HIV to lead longer lives.16 In turn, people with HIV now face the challenge of an elevated risk for developing comorbidities, and the associated burden of developing polypharmacy—generally defined as taking 5 or more pills a day.6
The Positive Perspectives Wave 2 study investigated the burden of comorbidity and polypharmacy—defined as taking 5 or more pills per day or medicines for 5 or more health conditions—among people with HIV, and found both were prevalent within the cohort:3,6
*Total number of participants is 2,112 as the figures were calculated before the inclusion of additional data from Russia and South Africa.
Adapted from Positive Perspectives Study, Wave 2 Results Report.3
Polypharmacy within Positive Perspectives Wave 2 was also found to negatively impact the HRQoL of people with HIV, regardless of viral suppression status.6
These results from the Positive Perspectives Wave 2 study reaffirm the need for open and active dialogue to understand the concerns of people with HIV.3 Concerns about the evolving treatment needs of people with HIV should be discussed with HCPs to ensure best possible HRQoL.3
See how polypharmacy impacts the HRQoL of people with HIV
TREATMENT CHALLENGES AND ASPIRATIONS
While ART has transformed the lives of millions of people with HIV, treatment priorities and concerns around adherence continue to evolve.3,7 Adherence concerns arise from a myriad of complex unmet psychological, emotional and physical needs experienced by people with HIV.7
Results from the Positive Perspectives Wave 2 study indicate many people with HIV have concerns that may affect their treatment adherence, but which they may not feel comfortable discussing with their HCP. A majority of participants also believed future advancements in HIV care would improve their health.3,7
72% (745/1,041) of participants who reported experiencing side effects from their HIV medication indicated that they impact their daily life3
Open and active dialogue may be a useful tool for improving HRQoL for people with HIV who have concerns that could affect adherence. Initiating discussions around HIV care provides the opportunity for people with HIV to raise health concerns and may allow HCPs to identify and address specific needs.3,7,17
How can discussing concerns around adherence help tailor HIV care to meet the health goals of people with HIV?
HIV IN UNDER-REPRESENTED GROUPS
People with HIV are a diverse community comprising multiple under-represented groups.3,18 Achieving the fourth 90—a good HRQoL—for all people with HIV means acknowledging the distinct differences in physical, mental and social health among each under-represented group.3,18–21
The Positive Perspectives Wave 2 study highlighted that different under-represented groups within the positive community experience significant unmet needs, which can differ based on age, gender or sexual orientation.3,18–21
Open dialogue could help identify and address the unmet needs of under-represented groups of people with HIV3, 18-20
The Positive Perspectives Wave 2 study is the second in a series of studies aimed at revealing the experiences of people with HIV and providing insights into HRQoL and challenges in HIV care.3
Positive Perspectives Wave 2 is one of the largest, global, HIV patient-reported outcomes studies to date: 2,389 people with HIV aged 18–84 across 25 countries participated in the Positive Perspectives Wave 2 study.3
HRQoL is an increasingly important aspect of holistic care for people with HIV.8,9 Patient-reported outcome measures (PROMs) provide a patient-centred approach to quantifying responses to care.9 The PozQoL scale is a validated tool for people with HIV, developed in Australia for day-to-day use in health and community services.22,23
Tools like PozQoL help to empower people with HIV to engage in open and active dialogue with their HCP.9
- Wandeler G et al. Curr Opin HIV AIDS. 2016; 11(5): 492–500.
- Althoff KN et al. Curr Opin HIV AIDS. 2016; 11(5): 527–36.
- ViiV Healthcare. Positive Perspectives Study, Wave 2 Results Report. June 2021. Available at: https://viivhealthcare.com/content/dam/cf-viiv/viiv-healthcare/en_GB/files/030821-updated-pp2-report-approved.pdf Accessed October 2021 Accessed November 2021.
- Okoli C et al. AIDS Behav. 2021; 25(5): 1384–95 (including supplement).
- Allan B et al. Popul Med. 2021; 31: 1–14.
- Okoli C et al. Prev Chronic Dis. 2020; 17: E22.
- de Los Rios P et al. AIDS Behav. 2021; 25(3): 961–72.
- Lazarus JV et al. BMC Med. 2016; 14(1): 94.
- Lazarus JV et al. Nat Commun. 2021; 12(1): 4450.
- Okoli C et al. Putting the heart back into HARRT: Greater HCP-patient engagement is associated with better health outcomes among persons living with HIV (PLHIV) on treatment. Presented at IAC 2020, July 6–10; Virtual.
- Flickinger TE et al. J Acquir Immune Defic Syndr. 2013; 63(3): 362–6.
- Dawson-Rose C et al. J Assoc Nurses AIDS Care. 2016 27(5), 574–584.
- McMahon JH et al. Med J Aust. 2021; 215(5): 201–2.
- ASHM. U=U: ASHM Guidance for Healthcare Professionals. October 2020. Available at: https://www.ashm.org.au/resources/uu-ashm-guidance-for-healthcare-professionals/ Accessed November 2021.
- Okoli C et al. Sex Transm Infect. 2021; 97(1): 18–26.
- The Antiretroviral Therapy Cohort Collaboration. Lancet HIV. 2017; 4(8): e349–56.
- de Los Rios P et al. Popul Med. 2020; 2: 23.
- Okoli C et al. Treatment experiences, perceptions towards sexual intimacy and child-bearing, and empowered decision making in care among women living with HIV. Presented at the 10th International Workshop on HIV & Women, Boston, MA, March 6-7, 2020.
- Short D et al. Clinical and sociodemographic characteristics associated with poor self-rated health across multiple domains among older adults living with HIV. Presented at the 23rd International AIDS Conference, July 6–8 2020; Virtual.
- Short D et al. Understanding the changing treatment concerns of older people living with HIV and difficulties with patient-provider communication. Presented at the 23rd International AIDS Conference, July 6-10, 2020.
- Okoli C et al. “What about me?” The unmet needs of men who have sex with women and differences in HIV treatment, experiences, perceptions, and behaviours by gender and sexual orientation in 25 countries. Poster P016 Presented at HIV Drug Therapy Glasgow 2020, October 5-8 2020, Virtual.
- Brown G et al. BMC Public Health. 2018; 18(1): 527.
- PozQoL. About PozQoL. Available at https://www.pozqol.org/about-pozqol/ Accessed November 2021.
The Positive Perspectives Wave 2 study was sponsored by ViiV Healthcare.
This study could not have been completed without people living with HIV who have generously shared their time, experiences, and bodies, for the purposes of this research. Much of the fight against HIV and AIDS relies upon people living with HIV continuing to put themselves forward and this research and our fight against HIV and AIDS is indebted to those past and present.
NP-AU-HVX-WCNT-220003. Date of preparation: April 2022.