QUALITY OF LIFE FOR PEOPLE LIVING WITH HIV: WHEN STRIVING FOR SURVIVAL IS NO LONGER GOOD ENOUGH
Advances in research and the widespread availability of potent antiretroviral therapy (ART) have transformed HIV healthcare and what was once a life-threatening infection is now a chronic condition, to be managed over a life-time. People living with HIV (PLHIV) can now expect a longer life-expectancy than ever before, and care and treatment are no longer about just prolonging life, but also about ensuring good health-related quality of life (QOL).1
Dr Nneka Nwokolo,
Senior Global Medical Director,
With increased access to HIV medicines across the globe, substantial progress has been made in reaching the UNAIDS 90-90-90 targets - 90% of all PLHIV in a community or a country are aware of their HIV status; 90% of those aware will be accessing treatment and 90% of those on treatment will have suppressed viral loads.2 As improvements in HIV medicines continue and increasing numbers of people benefit from these advancements, the average age of people living with HIV is expected to rise, with those aged 50 or over predicted to increase to almost nine million globally by 2020.3
It’s complicated: unique challenges affecting the healthy ageing of PLHIV
With a newly emerging ageing HIV population comes a complex set of health-related challenges that need to be considered and addressed. People ageing with HIV have many of the same health-related problems as the general population including comorbidities and polypharmacy. But they are also at higher risk of experiencing other chronic illnesses such as cardiovascular disease, hypertension, Type-2 diabetes and chronic kidney disease than those who do not have HIV.4 With this comes the need to take life-long treatment for their infection – often consisting of multiple components for as many as 40 years or more.5 A host of issues, such as depression, anxiety, financial stress and experiences of, or apprehension about, HIV-related discrimination prevent many PLHIV from relegating their HIV to the periphery of daily life.1 This can have a detrimental impact on their emotional wellbeing and health-related QOL, day in day out.6
Patient reported outcomes (PROs) provide great insights into the multitude of issues affecting PLHIV’s QOL. A recent survey into the QOL of PLHIV in 15 fast track cities (FTCs) sponsored by the International Association of Providers of AIDS Care (IAPAC) and in partnership with UNAIDS and Global Network for People living with HIV (GNP+) found the top worries about growing old with HIV to be:
- Decreasing mobility and disability
- Life-long HIV medication taking6
- Decreased life expectancy
Positive Perspectives – ViiV Healthcare’s international study involving a total of 1,111 PLHIV – provided further insights, showing that 61% (n=226 of 371) of PLHIV aged over 50 felt that HIV limits their life, with 36% (n=132 of 371) responding that they tend not to plan for their future, despite treatment advances that enable longer life expectancy. Furthermore, the study showed that 72% (n=783 of 1,085 surveyed on ART) of PLHIV sometimes worry about the long-term effects of their medicines. Approximately two thirds (66%; n=716 of 1,085) of PLHIV said taking their medication is a constant reminder of their HIV status, and over a third (37%; n=402 of 1,085) said they frequently or quite often hid their HIV medications to avoid revealing their status, particularly amongst those who reported experiencing stigma or high emotional impact of HIV.8
Shifting the focus towards the ‘fourth 90’
If we are to truly optimise long-term care for PLHIV, we need to listen and tailor healthcare to fully meet their individual needs including long-term physical and mental wellbeing and QOL. The focus needs to shift beyond surviving with HIV to the achievement of a ‘fourth 90’ – which aims to ensure 90% of people with a suppressed viral load have good health-related QOL.1
To help us reach the ‘fourth 90’ we need to improve understanding of the wider impact of living with HIV.
Improved engagement = improved health related quality of life for PLHIV
We are now at a pivotal point in HIV care, where a more holistic approach is needed. In addition to new HIV treatments aimed at addressing the worries about the effects of taking HIV medicines over a lifetime,8 PLHIV and their healthcare providers need to have a greater understanding of the changing HIV healthcare needs over a lifetime. In this way people can see how treatment choices fit with their current lifestyle and long-term plans. This greater understanding will hopefully generate choice and lead to greater treatment satisfaction.9,10
Empowering PLHIV to have open discussions with their healthcare professionals (HCPs) and encouraging them to take a more active role in their therapy choices are critical starting points. According to the Positive Perspectives study PLHIV who perceived themselves to be involved in their HIV therapy decisions are more convinced and satisfied with their treatment and have fewer concerns about side effects.8
For those who do not feel able to have such discussions with their HCPs, being able to identify peers or others who can advocate for, or support them, may be a way to enable them to be actively engaged in their care.
With such powerful evidence isn’t it time to stop focusing on the short-term and put our efforts into longer-term care? This will enable PLHIV to aspire to treatments that not only keep their virus undetectable and therefore untransmittable, but that also minimise side effects and support overall wellbeing, QOL and healthy ageing.
The proof is there - open and active dialogue between PLHIV and their HCPs is vital. We all have a role to play to make this happen in a much more consistent, widespread and holistic way.
By working together to put this knowledge into practice we can collectively make achievement of the ‘fourth 90’ a reality, ensuring that no PLHIV is left behind.
ViiV Healthcare is continually working to understand more about the real-world experiences and needs of PLHIV and how including people in their care in this way can directly impact treatment outcomes. As part of our continued commitment in this area we have organised a community event, entitled #HIVHasChanged: have your expectations? - directly exploring with the community how involving PLHIV in their care can positively impact health outcomes. We will also be running our third Implementation Science Workshop at EACS 2019 exploring how findings from our clinical studies translate into the real-world and real patient experiences. We are excited to share the outcomes of these meetings in due course.
- Lazarus JV, et al. Beyond viral suppression of HIV – the new quality of life frontier. BMC Medicine 2016;14:94.
- https://www.unaids.org/en/resources/presscentre/featurestories/2018/july/90-90-90-targets-workshop. Last accessed October 2019
- https://www.unaids.org/sites/default/files/media_asset/Get-on-the-Fast-Track_en.pdf Graph p92. Last accessed October 2019
- https://www.ashm.org.au/HIV/training/BeyondViralSupression_JeffreyLazarus_13Aug17.pdf Last accessed October 2019
- Trickey A, May MT, Vehreschild JJ, et al. Survival of HIV-positive patients starting antiretroviral therapy between 1996 and 2013: a collaborative analysis of cohort studies. Lancet HIV 2017;4(8):349-356
- Basavaraj KH et al. Quality of life in HIV/AIDS. Indian J Sex TRansm Dis AIDS. 2010; 31(2): 75-80
- Exploring and defining what quality of life means for communities: An exploratory survey into the quality of life of PLHIV in 15 FTCs [Fast track cities presentation]
- ViiV Healthcare. Data on File – Positive Perspectives Survey 2017
- Coutler, A, Ellins, J. Effectiveness of strategies for informing, educating and involving patients. BMJ. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1910640/pdf/bmj-335-7609-ac-00024.pdf Last accessed: April 2019.
- Berkman ND, DeWalt DA, Pignone MP, Sheridan SL, Lohr KN, Lux L, et al. Literacy and health outcomes. Evidence Report/Technology Assessment No. 87. Available at: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.210.2733&rep=rep1&type=pdf Last accessed: April 2019.