Historically, HIV care focused on quality of life (QoL), in part due to the limited treatment options available for people living with HIV at the time and on a strong humanistic desire from clinicians to provide optimum care for people living with HIV. Over the past 30 years there have been significant advances in HIV treatment, which have led the pendulum to swing back to a more medical focus in HIV care. The impact of being diagnosed and living with the condition, however, still has a significant impact on many across all aspects of their life. In 2014, UNAIDS (2014) launched its ambitious treatment project: 90-90-90. The aim of this was to ensure that by 2020, 90% of those living with HIV worldwide were aware of their status, 90% of those who know they were living with HIV were on treatment, and 90% of those on treatment were virally suppressed. The overall goal behind these targets is to eradicate HIV, based on the concept that, if more people living with HIV are aware of their diagnosis and are virally suppressed, new infection rates will be lower.
Although a strong focus on preventing new infection rates is understandable, Lazarus et al (2016) suggested that those living with HIV who are already virally suppressed may not benefit much from narrowing the focus of medical treatment through these targets alone. As such, they proposed adding a fourth aim, which was that ‘90% of people with viral load suppression have good health-related quality of life’. This call to the HIV scientific community to add a ‘fourth 90’ is a reminder to ensure that HIV services offer a full holistic approach when providing HIV care. We can reconceptualise this as, when we combine the four 90s, we create a full 360° view of the individual and the disease continuum, which is more reflective of the needs of people living with HIV.
Despite there being a significant number of researchers, clinicians and other advocates calling for the fourth 90 to be added officially to UNAIDS global targets, the calls have remained largely unheard. In 2021, UNAIDS (2021) released its strategy, Global AIDS Strategy 2021–2026, but what was notable was an absence of the fourth 90 in the document.
What do we mean by HRQoL?
Although Lazarus et al (2016) offered a timely reminder of the role of professionals to support people living with HIV to achieve and maintain a good health-related quality of life (HRQoL), they only began to hint at what this actually means. The concept of QoL is not a new phenomenon and can be traced back as far as Aristotle (384-322 BC), who stated that QoL is determined by its activities. In modern medical practice and research, the term first began circulating in the 1960s in the context of trying to quantify the value of extending patients' lives with constantly advancing medical techniques. Post (2014) referenced Elkington's (1966) summary that, what a doctor ‘wants for every one of his patients old or young is not just the absence of death but life with a vibrant quality …’. This idea of using QoL to ‘weigh up’ to what extent life-extending treatments are of benefit to, and desired by, patients continues to date. QoL Years (QALYs) is one of the key indicators in both the clinical effectiveness, and the cost effectiveness, of a treatment. Organisations such as the National Institute for Health and Care Excellence (NICE) in the UK routinely consider QALYs as an important factor when deciding whether a treatment is recommended or not. As HIV medical treatment advances there is an increasing need to prove the additional patient benefit from receiving newer and often more expensive therapeutics. This in turn has led to a renewed and increased desire to focus on QoL and HRQoL in people living with HIV.
Since its initial introduction to modern research in the above context, a proliferation of QoL definitions have been proposed across a multitude of academic disciplines. Adding further confusion, the terms quality of life (QoL), health-related quality of life (HRQoL) and health status are frequently used, yet there is little consistency in how they are defined, and how they differ. A number of interesting articles have reviewed the definitions of these terms in an attempt to seek conceptual clarification. Ironically, what has resulted from these efforts is, in fact, a growing agreement that there is unlikely to be any consensus on a single definition of QoL within the context of health care.
QoL is typically conceptualised as a wider appraisal of satisfaction with life as a whole. To this end, definitions often imply the need for some kind of subjective judgement of the individual, and there are often no suppositions made within these definitions about the specific factors (eg wealth, health, social connections) that should be appraised as part of QoL. An example definition is:
‘An individual's overall perception of and satisfaction with how things are going in their life’
Given its broad remit, it is perhaps not surprising that there are many varied definitions in the literature, a number of which will be considered here.
In comparison, ‘health status’, sometimes referred to as simply ‘health’, is often formulated as a much narrower concept, concerned with the degree to which an individual is or is not experiencing health symptoms, as well as the extent to which the presence of symptoms impact on functioning. NICE (2022) defines health status as ‘how healthy a person … is … based on a person's ability to carry out everyday activities and feel free from pain’. Elsewhere, health status has been defined as ‘an individual's level of function’ (Patrick et al, 1973). The World Health Organization (2020) definition is the most frequently used when exploring what heath is, and provides a more inclusive stance, suggesting that health as a ‘state of complete physical, mental and social well-being’. Some argue that this description is too broad, which may contribute to the confusion and overlap between existing definitions of the QoL, HRQoL and health status (Karimi and Brazier, 2016), and that definitions of health status should remain focused on physical wellbeing (Torrance, 1987).
Similarly, there are numerous definitions of HRQoL in the literature. Karimi and Brazier (2016) reported finding at least four. Torrance (1987), who was first to use the term in the literature, posited that QoL is ‘an all-inclusive concept incorporating all factors that impact upon an individual's life’ and that in contrast HRQoL ‘includes only those factors which are part of an individual's health’. Hays and Reeve (2010) defined it as ‘how well a person functions in their life and his or her perceived wellbeing in physical, mental and social domains’. Karimi and Brazier (2016) noted that these definitions did not really differ from definitions of health status, the former being aligned with WHO's definition of health, the latter with more narrow definitions of health focusing on physical wellbeing.
A third definition by Gold et al (1996) related to valuing health states, and seemed to be more specific in determining QALYs to assess treatment benefits. A fourth and final definition in Karimi and Brazier's (2016) review was by Ebrahim (1995):
‘Those aspects of self-perceived well-being that are related to, or affected by, the presence of disease or treatment.’
Although Karimi and Brazier (2016) felt that this was not much different from QoL as a whole, because health can theoretically affect all aspects of a person's life, it could be argued that there is a subtle key difference. It specifically states it is aspects that the individual feels are impacted by health. In that sense it does allow for any factors to be included, but only if the individual feels these areas are being affected by health.
Commonly used measures of HRQoL such as the SF-36 (Ware and Sherbourne, 1992) also focus on the presence and severity of symptoms, and the functional impact these have on people's lives. Post (2014) noted that this may be because, although these measures of frequently used in research to assess HRQoL, they were never specifically developed for this role—rather they are measures of perceived health.
It has been argued, therefore, that rather than continuing to strive for a universal definition and measurement a more useful approach for researchers and clinicians to take is to:
- Clearly define what they mean by QoL within their work
- Specify which factors they consider contribute to this definition of QoL within the population they study and/or care for
- Measure these factors accordingly (Farquhar, 1995; Post, 2014).
Why measure quality of life?
Measuring QoL in health care is important because it reminds us that the role of care is not to extend human life or improve a particular set of symptoms at any cost. The HIV community and health professionals will remember all too well this very dilemma at the beginning of the pandemic, when the earliest developing drug treatments came at a very high price in terms of side-effect profiles. Presently, nearly all drug trials include an assessment of whether a drug's impact on disease/illness results in improved QoL. It would be naïve to suggest that this was not in large part driven by the need to ensure treatments are cost effective; however, another incredibly important role that measuring QoL plays in drug trials is ensuring that we do not do more harm than good.
HIV care also needs to ensure that it does not value only physical health or (taking an even more blinkered view) HIV symptomatology alone as its sole indicator of good care.
Unsurprisingly, Post (2014) noted that HRQoL and health status are often measured using the same (or similar) measures. Some are more global measures of generic health symptoms, such as the SF-36, whereas others have been developed for more specific health populations and their common symptoms such as the Cystic Fibrosis Questionnaire-Revised Application (CFQ-R) (Quittner et al, 2012). A common feature of these measures it that, although they measure symptom presence and severity, and in turn the impact on function, they stop there, without assessing what this means to the individual.
For example, imagine that an individual living with HIV had such neuropathic pain that it precluded them from working. One individual might have spent years building up their own business, in an industry they loved, it was something they were proud of and spent the majority of their time doing. In contrast, a second individual could present with the same health issue that also resulted in an inability to continue work, but they were in a role they did not particularly enjoy, perhaps were nearing the end of the career anyway, they were fortunate enough to be financially comfortable without employment, and took great delight in other activities such as reading, which were not affected by the present health issue. It is easy to imagine that the presence of this same health symptom and its same impact on ability to work would be appraised very differently by these two individuals and, therefore, have a significantly different impact on how they felt about their life.
Working towards a definition of HRQoL in HIV
The WHO (2020) definition of ‘health’ specifies that health is not just the absence of illness, but also the presence of physical, social and mental wellbeing. HIV services within the UK have long been aligned with this definition, and recognise that the duty of care reaches beyond the narrow remit of disease management and treatment monitoring. HIV, perhaps more so that many other conditions, has the potential to have considerable impact on an individual across the physical, social and mental domains. HIV cannot be viewed as a stand-alone medical issue—it is impossible to disentangle the medical diagnosis from the psychological and social sequalae.
Moreover, considering these factors from a basic biopsychosocial model (Engel, 1977) perspective (Figure 1), we know that physical, psychological and social factors are not only individually important to an individual's wellbeing in and of themselves, but they are inter-related and affect each other. Thus, even if we were to concern ourselves only with the importance of medical management (an understandable myopia, given that implications of poor medical management within HIV can be fatal) for many individuals, focusing solely on medical issues to the disregard of psychological and social factors can actually mean medical management proves ineffective, as difficulties in these other areas have a negative impact on treatment (Box 1 provides an illustrative example).
Box 1.Case studySam* is a 30-year-old male originally from Lithuania. He used to be an active member of his local Lithuanian ex-pat community prior to his diagnosis of HIV 8 years ago. He identifies as gay, which his family back home in Lithuania do not know. He does not want them to know this as they have expressed homophobic views in the past. He is worried that, should they find out about his diagnosis, they would know that he is gay and disown him. This causes him a lot of anxiety and he manages this by going out less and less. He thinks that the less interaction he has with others, the less chance there is of anyone finding out about his diagnosis and sexuality. This has been going on for a long time, and he now finds it increasingly hard to leave the house for any reason and reports symptoms associated with social anxiety and agoraphobia. He was going out to work, but during the COVID-19 pandemic he was furloughed, then eventually made redundant. This has had a considerable impact on his finances; sometimes he has to choose between having enough food, having heating or having the bus fare to the HIV clinic.In addition to this, Sam also has a diagnosis of cancer, affecting his current treatment. This limits the number of antiretroviral therapy (ART) regimens that he can safely take. His HIV care team are worried as he has missed a number of appointments and they know he does not have enough medication to last him much longer. He has already had several breaks in treatment previously when the service could not contact him for months at a time, and has built up resistance to a number of treatment regimens, which had led his ART being changed twice in the past 18 months.Brief biopsychosocial formulationIn order to effectively treat Sam medically, he needs to be able to consistently access his HIV care. Current barriers to this are his social anxiety and agoraphobia, as well as his financial situation, all of which prevent him attending clinic appointments consistently.This example demonstrates how biopsychosocial factors can all co-exist and co-affect each other in such a way that focusing on bringing about change in the biological factors alone is unlikely to be successful. Instead, an approach that looks to address the psychological and social issues as well is necessary for effective medical management.*Sam is not based on any real individual. This case study is hypothetical based on clinical experiences
The case study highlights the complexities of defining QoL, with regard to considering Sam's health-related QoL. The case study also highlights the dynamic and the ever-changing nature of QoL and the need for providers of care to be aware of issues that may affect people's ability to access the care that they need. The biopsychosocial framework provides a way to understand Sam's care needs to help him engage in care.
Health professionals therefore not only have an ethical obligation to ensure that those under the care of their services are being assessed for and, where possible, treated and supported for the wider-ranging implications of HIV that impact on a person's wellbeing, but must also aim to do this to maximise clinical effectiveness.
The basic biopsychosocial approach acts as a guiding framework to encourage the clinician to consider which biological, psychological and social factors specific to the individual, or population of interest, are relevant to providing holistic care. Thus, we can expect that for different clinical populations different factors will be more or less important. For example, an important biological factor that clinicians in HIV services would consider relevant to every patient's care is current viral load; however, clinicians providing care in cancer services are very unlikely to consider this biological factor (unless the person also happened to have a diagnosis of HIV). Similarly, even within specific health populations, there may be further subdivisions of patient groups that have specific biopsychosocial factors that clinicians need to consider when understanding their needs with regard to health, treatment and wellbeing. This continues down to the individual level, in the recognition that everyone is different, and will therefore have different biological, social and psychological circumstances. We all have different life histories that bring a variety of experiences, learning and biases, and we all live within different systems (eg family, social, work, cultural)—all of which impact on how we engage with healthcare systems.
This approach would not only allow us to consider the inter-personal differences of what is important to QoL as outlined above, but also allows us to consider intra-personal differences. QoL must be considered to be a dynamic concept. At any given time, changes in someone's physical health, psychological wellbeing or social circumstances may in turn cause changes in how they appraise their current QoL. For example, consider an individual who has an operation on their foot, which causes them significant acute pain and immobility for 6 months while they heal. You may reasonably expect this to negatively affect the person's QoL, particularly if that individual does not have ready access to social support and has reduced finances due to loss of earnings while unable to work. This reduction in QoL may be transient, particularly if it was a planned procedure to alleviate a longer term issue. In this case, it might be that, after healing, the person reports higher levels of QoL than before the operation. Alternatively, if it was an unplanned procedure due to an accident, there may be ongoing factors past the acute healing phase that result in ongoing lower levels of QoL—for example, if the individual is left with persistent pain or permanent reduced mobility, or if they lose their job because they have had too much time off.
The success of HIV medications means that the condition should not impact on the life expectancy of individuals living with HIV. This in turn means that we are supporting individuals across their life spans—through different life stages and through the ageing process. Biopsychosocial factors that are of paramount importance to a 20-year-old individual living with HIV may be less important to them when they are 60 years old; thus, the care team need to know what factors are key now. In addition, some biopsychosocial factors may remain of equal importance, but changes that have occurred during this 40-year period, for example, increased financial security or loss of health, may impact on these factors, causing an increase or decrease in QoL.
Updating the definition
The authors are therefore proposing a definition of HRQoL in HIV as the understanding of an individual's whole-person wellbeing in relation to the biological, psychological and social sequalae of living with HIV—and their satisfaction with life in these areas as a result. We have made the conscious decision to included ‘health-related’ and ‘HIV’ in the term to recognise the fact that we are looking at the individual's QoL specifically in relation to living with HIV. Furthermore, this definition is based on the WHO definition of health, and the long-standing recognition that a diagnosis of HIV has an impact on a wide spread of psychological and social factors both directly and independently of biological factors. It also allows us to consider at the same time other external biological, psychological and social factors that impact on an individual's experience of living with HIV directly and indirectly. By external factors, we mean independently co-occurring issues that would exist without a diagnosis of HIV: for example if a person also happened to have other medical diagnoses such as diabetes, or if they had pre-existing mental health issues or social issues such as isolation or poverty. Finally, we have included the person's subjective view of what the impact of HIV on various domains of that person's life means to them.
An example of this is that someone with a late diagnosis of HIV may have developed health complications such as chronic pain, which prevent them from engaging in activities such as work and social events—thus there are social and psychological implications of the diagnosis as a direct result of that person's health status. Alternatively, someone may be living with HIV very well from a health point of view, yet also be prevented from engaging in activities such as work and social events due to factors such as stigma, anxiety or low mood that they are experiencing due to their diagnosis. The latter example represents social and psychological implications of the diagnosis that exist independently of the person's health status.
A key benefit of this approach is that it encourages services to start to appreciate the intersectionality of different aspects of an individual's identity, and how this can exacerbate the disadvantages that they face. ‘Intersectionality’ was a term first coined by black feminist scholar and lawyer Kimberlé Crenshaw (1989), who noted that ‘not all inequality is equal’. Intersectionality refers to the way individuals are subjected to and experience multiple acts of oppression, stigma and disadvantage by virtue of being a member of more than one marginalised group, for example being female, being non-white, being LGBQT+, being an asylum-seeker, being homeless, being disabled etc. It is well known that having a diagnosis of HIV carries heavy stigma for many people. When it comes to intersectionality, the sum is greater than its parts, meaning that the more ‘groups’ an individual belongs to, the greater the discrimination and disadvantages they experience.
Taking a biopsychosocial approach to formulating HRQoL in HIV allows services to appreciate how some of these specific issues may be impacting directly, and in conjunction with having a diagnosis of HIV, on an individual and their HRQoL. For example, an individual may already be facing persecution and exclusion in their community because they are an asylum-seeker. If they also have a diagnosis of HIV, this could magnify their experiences of persecution and exclusion.
Conclusion
It is clear that QoL is a complex construct that is hard to singularly define. What it means will be different for different people at any given point (interpersonal differences), but also different for the same person at different points in their life span (intrapersonal differences). How it is facilitated or impeded will be different, depending on different people and how they are systematically disadvantaged (or not) by the wider systems around them. In addition to this, it is hard to draw boundaries of what constitutes ‘health-related’ QoL, especially for a complicated condition like HIV, which has physical, psychological and social symptoms for many.
Yet it cannot be ignored if we are to say that we endeavour to provide gold-standard quality care to those individuals living with HIV accessing our services, nor if we are to ensure that we are minimising any potential disruptions to the specific medical aspects of care (namely antiretroviral therapies) that we provide.
We therefore propose that services may find it more useful to have a definition that acts as a framework for ‘assessing’ QoL. This would help ensure that services consider all things that might be relative, but without being prescriptive, so that it is still person centred. This avoids a narrow focus on looking only at the things we think are important based on our own view and experiences, while minimising the risk of missing things we may be blind to as a result of experiences we have not had, and views we have not considered.
Moreover, QoL should be seen as a dynamic, ever-changing process. It is not something that can be captured at a single time point, but rather needs to be continually evaluated at regular intervals as part of good clinical care, to account for factors such as sudden, significant changes in circumstances, the changing needs and values of an individual across the different stages of their life span, and the ageing process.
KEY POINTS
- Despite significant advances in treatment of HIV, being diagnosed with HIV can have significant impact for many people across all aspects of their life
- Within the literature, the terms quality of life (QoL), QoL Years (QALYs) and health-related QoL (HRQoL) are used interchangeably, so it is important to have a clear definition of what HRQoL means within HIV care, the factors contributing to the definition and, importantly, how to measure these factors
- As HIV care moves towards a long-term manageable condition it is important health professionals are aware of the significance of measuring HRQoL to ensure services are designed to reflect the needs of those living with HIV
- The biopsychosocial framework acts as a guide to considering the holistic health needs of people with HIV. It enables health professionals to consider the interpersonal and intrapersonal differences of what is important when considering QoL issues alongside the dynamic nature of life
- HRQoL in HIV care involves understanding an individual's whole-person wellbeing in relation to the biological, psychological and social sequalae of living with HIV and an individual's satisfaction with life in these areas
CPD reflective questions
- Consider the term health-related quality of life (HRQoL). What does the term mean to you?
- Consider what factors affect the HRQoL of people living with HIV. How can you support the patients in your care to improve this?
- Reflect on your role as a nurse with regards to improving HRQoL. What barriers do you experience in your clinical practice?