Although we have seen decades of continual advancements in the understanding and treatment of HIV, the impact of being diagnosed and living with the condition still has a significant impact on many people, across all aspects of their lives. It would appear that the central focus of the HIV epidemic has been largely around the needs of men, with those of women and young girls living with HIV remaining an afterthought, and one that is still considered only within the existing framework of knowledge around men's needs, rather than those of everybody living with HIV. As the care paradigm of HIV continues to evolve, healthcare providers are urged to consider the needs of women living with HIV when delivering services.
In 2014, the Joint United Nations Programme on HIV/AIDS (UNAIDS) launched its ambitious global targets of 90-90-90; aiming to ensure that by 2020 (UNAIDS, 2014):
- 90% of those living with HIV worldwide are aware of their status
- 90% of those who know they are living with HIV are on treatment
- 90% of those on treatment are virally suppressed.
The overall goal behind these targets is to keep progressing towards the end of HIV, as the more people living with HIV who are virally suppressed, the lower new infection rates will be.
There have since been calls from the scientific community to add a fourth 90:
‘That 90% of people with viral load suppression have good health-related quality of life.’
Sadly, to date, this call has yet to be answered, as the focus remains on preventing new infections.
What do we mean by quality of life and health-related quality of life?
The terms quality of life (QoL), health-related quality of life (HRQoL) and health status are frequently used interchangeably within the literature (Karimi and Brazier, 2016). However, there is very little consistency in how these concepts differ from each other. It is unlikely that a universal definition will be reached with regards to QoL. Therefore, a more pragmatic approach has been suggested (Farquar, 1995; Post, 2014; Croston and Bourne, 2022 in press) where researchers and clinicians:
- Clearly define what they mean by QoL within their work
- Specify what factors they consider contributing to this definition of QoL within the population they study and/or care for
- Measure these factors accordingly.
HRQoL in HIV has previously been defined as an understanding of an individual's whole-person wellbeing in relation to the biological, psychological and social sequelae of living with HIV (Croston and Bourne, 2022 in press). This definition is based on the World Health Organization's (WHO) definition of health (WHO, 2020), and the long-standing recognition that a diagnosis of HIV has an impact on psychological and social factors, both directly and independently of biological factors.
This definition will be used to highlight some of the unique biological, social and psychological issues, which may impact on the QoL of women living with HIV. In this article, the authors consider the term women to be an inclusive term to represent all individuals who identify as a woman all or part of the time. When specifically referring to women who were assigned female gender at birth, the authors use the term cis-women. When talking about women who were assigned a different gender at birth, they use the term trans-women. In addition to this, some of the issues raised here may be relevant to individuals who do not identify as women but were assigned female gender at birth. The authors acknowledge that in writing this article, they may get things wrong in terms of the way they use language around gender and identity; and they welcome discussion, correction and education on this.
Currently within the UK 1 in 3 of those infected with HIV are cis-women, with one quarter of new infections being reported in this group (Public Health England (PHE), 2019). There is very limited data available about the prevalence of HIV among trans individuals. The year 2017 was the first time PHE reported figures on the number of transgender and non-binary individuals living with HIV in the UK. Some 113 trans-women and gender diverse individuals accessed HIV care that year. The paucity of information about the number of trans-women living with HIV in the UK is itself indicative that we do not know enough about the needs of this particular group. This is, unfortunately, not surprising, given that there is no reliable estimate of how many transgender individuals currently live in the UK, as gender identity has been limited to binary options in previous versions of the national census. However, speculative estimates suggest that somewhere between 200 000 and 500 000 transgender individuals currently live in the UK (Government Equalities Office, 2018). Given that, globally, it is estimated that as many as 1 in 5 trans-women may be living with HIV (Baral et al, 2013) this would heavily imply that the number of trans-women reported to be accessing HIV care in the UK is highly under-representative of the true number.
A high proportion of all women diagnosed with HIV have been diagnosed late and, on average, they have been living undiagnosed for between 3 and 5 years (Umeh et al, 2011). This suggests that there needs to be more awareness with regards to women's vulnerability and risk to acquiring HIV among health professionals and to their subsequent health needs related to receiving a late diagnosis. There is also evidence of gender differences regarding HIV treatment and HIV-related health outcomes.
In addition to this, women living with HIV have reported high levels of unmet need relating to social and welfare issues, and report significant levels of psychological distress (Terrence Higgins Trust, 2018; PHE, 2019).
In the UK, a significant proportion of women living with HIV are over the age of 50 years and will require healthcare services to consider what care they will need as they age with HIV. Alongside this is the need to future proof services to meet the complex needs of women living with HIV. There is a wealth of evidence indicating that, at present, services are not necessarily designed to meet the needs of these women (Terrence Higgins Trust, 2018). It is hoped that exploring the key biopsychosocial factors that impact on the HRQoL of women living with HIV will be the first step in creating a good clinical practice guideline or tool, which will enable organisations to proactively establish services that meet the needs of women.
Biological factors in HIV care for women
There are a number of sex and gender differences that are relevant both to the treatment of HIV and long-term consequences of living with HIV. Cis-women typically have lower viral loads (VL) and higher CD4 counts early on in HIV infection than men. Over time, however, cis-women display a faster disease progression than men given the same VL. In clinical settings this information may not always be at the forefront of health professionals' minds when making decisions about care (Anderson, 2005).
Pharmacokinetics
There have also been noted differences in antiretroviral therapy (ART) drug absorption and disposition between men and cis-women (Umeh et al, 2011; Tran et al, 2016). In a comprehensive review of sex differences in HIV treatments, Floridia et al (2008) proposed that pharmacokinetic differences in ART may be attributable to differences in the P450 enzyme system, but the overall sentiment within this area of research is that much more research is needed to understand differences in pharmacokinetics within ART. With regards to side-effects of ART, cis-women are at higher risk of a number of adverse side-effects (Tran et al, 2016) including an increased risk for:
- Pancreatitis
- Gastrointestinal intolerance and metabolic disorders
- Hepatic steatosis
- Lactic acidosis
- Fat accumulation
- Increased levels of triglycerides
- Non-nucleoside reverse transcript inhibitors (NNRTI)-associated rash and hepatotoxicity,
- Protease inhibitor (PI)-associated diabetes.
They are also more likely to have decreased fat atrophy and bone mineral density (Anderson, 2005). This potentially places cis-women at a greater risk of comorbidities and health complaints as a result of the natural ageing process.
Menopause and cardiovascular disease
Another major sex-specific issue in HIV is the menopause. In the UK, normative data suggests that most cis-women become menopausal between the ages of 45 and 55 years, with an average age of 51. Early menopause is defined as ≥12 consecutive months of amenorrhoea due to natural causes at ≤45 years.
Premature menopause is defined as ≥12 consecutive months of amenorrhoea due to natural causes at ≤40 years. There is considerable data that have shown that premature and early menopause are associated with a number of serious negative outcomes. Jacobsen et al (2003) followed a very large cohort of Norwegian women (19 731) over a 37-year period. They found that an early natural menopausal age increased the risk of premature ageing and death. In addition to this, premature and early menopause are associated with the development of comorbidities such as osteoporosis (Santoro et al, 2009) and cardiovascular disease (CVD). In Europe, evidence shows that women are at a higher risk of death from CVD than men—51% compared to 42% respectively (Nichols et al, 2014). However, it appears to be women who are post-menopausal who are at most risk. A large cohort study found the incidence rate of CVD in post-menopausal cis-women was double that of pre-menopausal cis-women, and that this risk applied to both naturally occurring and surgically induced menopause (Gordon et al, 1978).
Recent research has confirmed that post-menopausal cis-women living with HIV are just as much at risk of CVD as the general population. The POPPY study (Bagkeris et al, 2018) assessed the risk of CVD in cis-women living with HIV aged ≥50 years (n=86), compared with age-matched cis-women who were HIV negative (n=109). Eighty-three per cent (n=163) of the women in the study were defined as post-menopausal. Similar CVD risk factors were seen among HIV-positive and age-matched HIV-negative cis-women. What was most concerning, however, was that a substantial number of cis-women with a high CVD risk and/or hypertension were not receiving medication for these conditions. The authors reported that 79% of patients in the study were eligible for lipid-lowering drugs, and 56% were eligible for anti-hypertensives, but they were not receiving any medication.
Widening the lens from physical health outcomes, cis-women who experience premature and early menopause also report increased levels of depression and anxiety, poorer sleep, reduced libido, and overall lower QoL (Royal College of Nursing, 2019). It is interesting to note that all these factors can and have been reported to co-occur independently of the menopause, significantly impacting on women's QoL. However, there appears to be little evidence that explores the accumulating issues such as lack of sleep, psychological distress, lower libido and so on alongside women's QoL. The Prime study recently reported that 10 350 women living with HIV aged between 45 and 56 (potentially menopausal age) attended HIV care in the UK; a fivefold increase over 10 years. The data showed a high prevalence of somatic (hot flushes, muscle and joint pains and sleep disturbances: 89%), urogenital (vaginal dryness, sexual problems: 68%), and psychological (anxiety, depression: 78%) symptoms in women living with HIV aged 45-60 years, which for many could be linked to menopausal changes. See the case study in Box 1.
Box 1.Case studyJuliet Green (not her real name) is a 43-year cis-woman who has been attending the HIV clinic for nearly 20 years. Her 19-year-old daughter, Rebecca, who is also living with HIV, is planning to leave for university. Juliet comes into clinic to get her annual blood tests and doesn't look her usual self: she usually dresses up for her visits, but instead she has no make-up and her hair doesn't look in good shape.When the nurse is alone with Juliet, she asks her how she is doing. Juliet avoids eye contact and then reports that she has not been doing OK. Rebecca's university is over 150 miles away and Juliet is concerned that she won't get to see her apart from during the holidays. Juliet's husband died over 12 years ago and, while in some ways she would like another relationship, she also feels apprehensive about it. Juliet's eyes begin to well up as she explains that she has no sexual desire and feels very low in mood. All these factors are affecting her sleep.After listening to Juliet, the nurse signposted her to services that she thought might be able to help her with the concerns she raised—a local peer support group, and her GP for discussion of possible treatments and referral to a clinical psychologist.
There is mixed evidence concerning whether a diagnosis of HIV and/or its treatment has an impact on the cause of menopause in cis-women. In a systematic review of HIV and menopause, Imai et al (2013) found some evidence that cis-women living with HIV entered the menopause earlier than cis-women without a diagnosis of HIV. However, there are also studies that failed to find any significant difference in the onset of menopause in these two populations. Cejtin et al (2006) also found that a large number of cis-women in their study were not actually menopausal despite having symptoms such as extended amenorrhoea, which indicates that transition into menopause could be missed. The study highlights the importance that cis-women need to know if they are menopausal so as to monitor for increased comorbidities such as reduced bone density, and take necessary steps to mitigate their increased risk of CVD. They can also make lifestyle changes such as to stop using contraception, which can often be burdensome and expensive. Furthermore, bleeding after the menopause can be a symptom of other serious illnesses, so knowing whether or not menopause has occurred helps identify and investigate unexplained bleeding more quickly.
A final biological consideration is the use of hormone replacement therapy (HRT). HRT can be prescribed to cis-women to mitigate the negative symptoms associated with menopause, which can have considerable impact on cis-women's HRQoL, and HRT would therefore be of significant benefit. There is evidence that HRT is linked with increased CVD risk, thus advice is to give the lowest dose for the shortest time possible (Grady and Sawaya, 2005). Despite the known benefits of HRT, Andany et al (2016) noted in their comprehensive review that it appeared to be underutilised for menopausal cis-women living with HIV. They suspected this was due to potential concerns about possible drug interactions between HRT and ART. There is, however, no research in this area on which to base decisions, and this may have a significant impact on a large number of women's HRQoL.
Conversely, many trans-women use long-term hormone therapy as an important part of their gender-affirming therapy; and therefore it must be assumed that many trans-women living with HIV will be on hormone therapy. So here we have a worrying problem: are we under-utilising HRT in cis-women where it could be used more to offer relief from distressing menopausal symptoms, and/or are we not recognising, monitoring and managing the increased risk of potentially harmful hormone therapy and ART drug interactions that could be affecting trans-women?
What is clear when we consider biological factors related to HRQoL in women is that there are still a lot of unknowns, because we are only just starting to ask the questions relevant to the ageing population of cis-women and the long-time marginalised trans-women, who are accessing HIV services.
Psychological factors in HIV care for women
Although levels of psychological distress and difficulties are higher for the whole population of individuals living with HIV compared to the HIV-negative population (Chaponda et al, 2018), there is evidence that women living with HIV suffer increased levels of psychological distress compared to men living with HIV.
Common mental health disorders
Waldron et al's (2021) recent review of the unique and unmet needs of women living with HIV offers an excellent and timely summary of psychological distress experienced by cis-women living with HIV. The authors preface their review by noting that, in the general population, it is well documented that cis-women report higher rates of common psychological disorders (citing Breslau et al, 1997; Noble, 2005; Breslau and Anthony, 2007; McLean and Anderson, 2009).
Cis-women living with HIV are more likely to be depressed than HIV-negative cis-women, and they report increased symptom severity (Morrison et al, 2002). This is also true when comparing prevalence and severity of depression (Ickovics et al, 2001) of cis-women living with HIV with that in men living with HIV. Similarly, evidence shows a higher prevalence of anxiety in women living with HIV when compared to HIV-negative cis-women (Morrison et al, 2002) and men living with HIV (Gaynes et al, 2008).
There is strong and consistent evidence that people living with HIV experience higher rates of trauma compared to the general population (LeGrand et al, 2015). Unsurprisingly, women living with HIV appear to be even more disproportionately affected by trauma. For example, in cis-women living with HIV who were accessing care at a hospital in Togo, just over 63% reported experiencing physical violence in their lifetime, and just under 70% reported having experienced sexual violence (Burgos-Soto et al, 2014). A large-scale meta-analysis of cis-women living with HIV in western countries found that 30% of the cis-women in the sample had recently experienced post-traumatic stress disorder, which is five times higher than among cis-women in the general population (Machtinger et al, 2012). Furthermore, the lifetime prevalence of experiencing abuse was extremely high (61.1%–71.1%, dependent on type of abuse reported).
Information about the psychological wellbeing of trans-women living with HIV is sparse. Within the general population, transgender individuals are more likely to experience psychological distress compared to their cis-gender counterparts (Tan et al, 2020). However, the depth and breadth of research is lacking compared to the relative wealth of data on the mental health of cis-gender individuals in the general population. A recent publication (Jaspal et al, 2018) reporting data for the first time on trans and gender-diverse people accessing HIV care in England found that they were significantly more likely to be under psychiatric care compared to cis-gender individuals accessing HIV services (11% vs 4%).
Suicide and suicidality
There are also important research findings specific to cis-women and trans-gender women when it comes to suicidal thoughts and behaviours. Traditionally, suicide risk may be something that clinicians, and the general population, associate more frequently with males and it is true men are far more likely to die by suicide completion than women (Freeman et al, 2017). What this masks, however, is the fact that women are more likely to attempt suicide, think about suicide, and self-injure (Schrijvers et al, 2012). The literature around women living with HIV and suicidality shows that cis-women living with HIV may be more likely to attempt suicide than their male counterparts (Komiti et al, 2001); and that the period immediately after diagnosis may be one of significantly increased risk.
In addition to this, there is also consistent evidence that prevalence of suicidal ideation and attempts in transgender individuals is extremely high (Virupaksha et al, 2016). Again, specific information considering suicidal thoughts and behaviours in trans-women living with HIV is extremely lacking, so it is hard to provide any useful overview within this article.
Perinatal and postnatal mental health
Pregnancy and the postpartum period is a time where cis-women are at increased risk of psychiatric disorder (Vesga-López et al, 2008). A meta-analytic study found that cis-women living with HIV had a significantly higher odds ratio of antenatal and postnatal depressive symptoms than HIV-negative cis-women (Zhu et al, 2019). Moreover, research has also found that women with lower CD4 counts (<200) were more likely to be depressed during the perinatal period that those with higher CD4 counts of 500 (Kapetanovic et al, 2009).
In clinical practice, it is paramount that people providing care for women living with HIV are aware of the psychological impact that HIV has on overall HRQoL. When placing this in the context of our biopsychosocial model of HRQoL in HIV, we are reminded of the impact psychological factors can have on biological factors. Reduced psychological wellbeing has been shown to have deleterious effects on physical outcomes in health care (Naylor et al, 2012) and HIV is no exception. Studies show that, for cis-women living with HIV, depression is related to increased mortality; depression and anxiety have both been linked with disease progression; depression and trauma symptoms are related to lower ART adherence; and, finally, trauma is associated with a higher risk of acquisition and transmission of HIV (Waldron et al, 2021).
Social factors
The distinction between psychological and social factors can sometimes be confusing because they are often inextricably linked, a point that will be explored further in the next section. Psychological factors can be thought of as those that occur at the individual level: processes and outcomes that are specific to the person. Social factors are the processes, norms, values and phenomena that are not specific to an individual, but that impact on individuals living within any given society. As individual members of any given society or social group, we have a responsibility as to the societal factors we uphold, consciously or unconsciously, and to those that we challenge.
Stigma and discrimination
It is a lamentable and unacceptable fact that a diagnosis of HIV still carries considerable stigma for people living with this condition. Studies that explore the experiences of cis- and trans-women living with HIV have shown that women may experience higher levels of both social and internal stigma. For example, there is evidence that cis-women are dealt a double blow of blame and negative judgement when it comes to HIV acquisition and transmission. Women living with HIV are more likely to be given labels such as ‘immoral’ and ‘promiscuous’ than men; and also women are blamed for being ‘dirty’ and ‘tempting’ as the cause of men acquiring HIV (Visser, 2012; Visser and Sipsma, 2013; Rice et al, 2017; 2018). In a review of the literature, Paudel and Baral (2015) noted that HIV stigma in cis-women is associated with rejection from family, friends and society, feelings of loss and uncertainty and psychological difficulties including depression, anxiety and suicidal ideation.
Many trans-women experience daily stigma and discrimination in the form of gender identity discrimination, transphobia and violence, which also lead to isolation and increased psychological distress (Magno et al, 2019). Although there is plenty of research into how these experiences increase trans-women's risk in relation to acquiring HIV, it was harder to find any research that discussed the experiences of trans-women already living with HIV.
Gender-based and intimate partner violence
Gender-based violence and intimate partner violence are both known risk factors for HIV acquisition for women. When it involves sexual violence, there is a direct pathway in that rape is likely to be condomless (Campbell et al, 2013); and women are more likely to suffer vaginal or anal tears (McLean et al, 2011), which further increases transmission risk. In addition to this, women who are currently in violent relationships, or have previously experienced either gender-based violence or intimate partner violence, are less likely to be able to negotiate condom use and safe sex in current relationships (Wingood and DiClemente, 2000). Gender-based and intimate partner violence also indirectly increases the risk of HIV acquisition, as women who experience such violence are more likely to experience a range of psychological and social difficulties as a result, which also increase their risk of acquiring HIV (UNAIDS, 2019).
In addition to this, there is also evidence that women living with HIV are more likely to experience gender-based violence and intimate partner violence than women without HIV (Gielen et al, 2000).
Poverty, lack of education and high risk and transactional sex or sex work
Both cis- and trans-women are disproportionately affected by poverty and a lack of access to education, which are both well-established risk factors for acquiring HIV (Avert, 2019). Women living in the poorest conditions may have few options when it comes to work and relationships; they are therefore more likely to engage in high-risk sex work, and to have to stay in violent relationships (Pascoe et al, 2015). HIV infection is higher in both cis- and trans-women working in sex work due to the repeated risk of exposure through sex, multiple sexual partners, higher risk sex acts and higher incidence of condomless sex either through increased risk of rape, or through not being able to negotiate safe sex (Evens et al, 2019).
Research has shown that in cis-women, there is a strong link between education and HIV risk. Girls who have no access to education have double the risk of acquiring HIV compared to their schooled counterparts. A UNAIDS study in Botswana demonstrated that every additional year of education reduced a girl's risk of acquiring HIV by 11.6% (UNAIDS, 2019). Trans-women are also at high risk of not completing their education due to a range of factors such as facing discrimination and bullying at school and being thrown out of their homes (Magno et al, 2019).
Health inequalities
It is well documented that cis- and trans-women have less access to sexual health care and/or attend sexual healthcare settings less than men (Avert, 2019; 2020). This increases their risk of acquiring HIV due to lack of testing in higher risk populations, and less access to preventive measures such as condoms and pre-exposure prophylaxis (PReP) (Terrence Higgins Trust, 2018). Reduced access to health care also has obvious implications for women living with HIV, in that it means they cannot readily access ART and be monitored for HIV progression and the development of AIDS-related infections. All of this equates to delayed diagnoses, health complications associated with advanced HIV, and increased rates of mortality.
All of the social factors mentioned so far in this article are associated with poorer access and engagement with health care for women (Avert, 2019; 2020). Moreover, when women living with HIV do access health care, they often experience discrimination and stigma, which affects the quality of their care and the likelihood of returning for further care (Wagner et al, 2016; Magno et al, 2019), which has obviously worrying implications regarding worse outcomes, including unnecessary deaths.
Discussion
The biopsychosocial model of HRQoL in women living with HIV presented here helps create awareness and understanding of the many factors that impact on the dynamics that contribute to the risk of women acquiring HIV, how women experience a diagnosis of HIV, and how a diagnosis of HIV impacts on their lives. It is important to understand, however, the way in which these factors layer on top of each other to create a condition that is more than just the sums of its parts. It is essential to understand how each factor impacts on other factors within any given context for any given individual.
An intersectional approach to understanding HIV and women
One way to do this, is to build a person-centred understanding using an intersectional approach. The concept of intersectionality was first developed by the black feminist scholar and lawyer Kimberlé Crenshaw (1989). It refers to the way individuals are subjected to and experience multiple acts of oppression, stigma and disadvantage due to being a member of more than one marginalised group; for example, being female, being non-white, being LGBQT+, being an asylum seeker, being homeless or being disabled. It is inherent to the theory that these labels are largely based on socially constructed power dynamics, rather than objective biological differences, and that this results in the creation and upholding of a broad spectrum of inequality (Mullings and Schulz, 2006).
For the purpose of this article, it is possible to make a simplified and reductionist example to illustrate Crenshaw's ascertain that ‘not all inequality is equal’. As has been made evident in this review, a diagnosis of HIV may result in many negative consequences for women. However, the way in which it impacts on, and is experienced by, for example, a black, cisgender woman, with a secure job, in a monogamous relationship, with close family, in an affluent country with free health care, will be different to that of a black, transgender single woman who has a limited support network, no steady stream of income in a country where health care is sparse. It is not within the scope of this article to fully explain and consider the nuances of intersectional theory; however, Caiola et al (2014) offer an accessible description of the theory, and a nuanced explanation of how it can be applied to understand the experiences and needs of women living with HIV.
Conclusion
This article is not an exhaustive review of the literature, rather it is a current overview of what we know in relation to the HRQoL factors that affect women living with HIV. It is intended to be an opportunity to acknowledge that a person-centred approach is needed to understand the unique way a person's life experiences will impact on how they live with HIV, with a particular focus on women who represent over half the population of individuals living with HIV (although these official statistics only refer to cis-women, so the true figures are higher when including trans-women). Women are often at higher risk due to structural inequality, and yet remain under-represented and excluded from research and policy. This is particularly true of trans-women. The purpose of this article has been to be inclusive of all women, yet we are mindful that our attempts to include the needs of trans-women may appear a tokenistic addition. This was never our intention, rather it is a reflection on what is currently explored and understood about the needs of this group of women, or rather the lack thereof.
More research is needed to be inclusive of all women and focus on their needs. Health professionals in clinical practice must understand women's needs within the context of their experiences by being more proactively aware of their biological, psychological, and social experiences and needs; and how these interact within the context of their HIV diagnosis if they are to provide effective care.
KEY POINTS
- Women living with HIV make up a significant proportion of individuals living with HIV in the UK and their needs are often not well understood and therefore overlooked by health professionals
- Health-related quality of life in women living with HIV is a complex area of care that needs exploring further within a person-centred framework
- Nurses play a significant role in advocating for the diverse needs of all women living with HIV
CPD reflective questions
- What do quality of life and health-related quality of life mean to you?
- Consider your service. How is it designed to meet the needs of women living with HIV?
- What do you think are the key challenges that women living with HIV will experience as a result of the ageing process?