What influences quality of life in older people living with HIV?

People living with HIV with access to effective antiviral treatments nowadays are growing older and living healthier lives than they were before these treatments became available in the mid-1990s [1, 2], while more people are acquiring HIV at an older age [3, 4]. In the UK there are now more than 25,000 people aged 50 and older living with HIV [4]. Yet, while health improvements and much increased survival rates are to be welcomed, the psychological and social consequences of ageing with HIV are complex. Although the individual impact of getting older with HIV can be positive e.g. [5, 6], the problems faced by older people with HIV include high levels of stigma [7‐10]; concerns about dependence on benefits [11], ongoing concerns about disclosure [12], and uncertainty over how ageing, HIV, and its treatment affect health [13]. Gender, ethnicity, sexuality, and social supports play an important role in how older people living with HIV adapt [5, 14‐18]. There is evidence for poorer reported quality of life (QoL) in older people living with HIV compared with younger people with the infection [19‐21], although this has not been a consistent finding [22, 23]. None of these studies has included a control group without HIV. There is concern about the physical impact of HIV infection in older people, both in terms of non-AIDS related morbidity [24], and cognitive function [25‐27]. Understanding how ageing, HIV, and QoL intersect is key to furthering our knowledge and to developing appropriate interventions to improve their QoL.

This paper is based on analysis of quantitative data gathered for the multi-method HIV and Later Life (HALL) Study [18]. The aims of the study were to uncover self-reported QoL, social supports, and mental health among older people living with HIV in the UK; identify links between them; and identify factors associated with reported mental health and QoL in this population. The study received ethical approval from Keele University and from the NHS-Research Ethics Committee in London.

Most study participants reported their QoL to be ‘good’ or ‘very good’ and reported low levels of depressive or anxious self-ratings. Bivariate analysis showed that better QoL was strongly associated with male gender, being in a relationship, in employment and not on state benefits, and having higher level of income; and to a lesser extent with being MSM, having higher education, and having being diagnosed after the age of 40. Multivariate analysis demonstrated that not being on state benefits was most consistently associated with better quality of life, as was being partnered. Concerns about everyday memory difficulties, and anxiety and depression scores were strong predictors of poor quality of life.

These results were comparable to those of Owen and Catalan [5] and Ribeiro Nobre and colleagues [6], whose participants, all older people living with HIV, reported finding meaning in life and having a positive attitude towards the future. In contrast, in a study comparing younger and older people living with HIV and using the same QoL instrument used in our study, Monteiro and colleagues [21] found older people living with HIV to have lower QoL in a number of domains (physical, level of independence, and social relationships), as well as more depressive symptoms. Differences in the heterogeneity of the populations and transmission categories in the studies, and the use of different instruments to measure depressive symptoms, as well as differences in the medical and social context of the participants may explain the discrepancies between these two studies.

Interestingly, two other studies using the same instrument to measure QoL as Monteiro and colleagues [21] and ourselves also gave contrasting results, Skevington and colleagues [23] not finding older people with HIV to have poorer quality of life than younger ones, while the WHOQoL HIV group [19] found older people to have worse quality of life than younger ones. The use of the same instrument suggests that the discrepant results are related to sampling and population differences: the former study [23] carried out their investigation in samples from 23 areas, including developing and developed ones, while the latter [19] included samples from six areas, most of them developing countries. Socio-economic factors and the context of medical services are likely have influenced the participants’ reported quality of life. These inconsistent findings in relation to age and QoL in the population of people living and ageing with HIV requires further research.

Reported memory difficulties, and depressive and anxious feelings, were strongly associated with lower QoL. Although neurocognitive disorders in older people with HIV are more common than in younger people [25‐27], subjective reports of memory problems do not always indicate the presence of cognitive impairment. Rather, these problems may reflect wider concerns over the ways in which age and HIV intersect to shape physical and mental health, which our analysis of qualitative data also revealed [13], and it is important to ensure appropriate cognitive screening [31].

Better economic indicators were shown to be strongly associated with better QoL, as reported by Monteiro and colleagues [21]. While not surprising, it highlights the risks that as people living with HIV continue ageing, financial independence is frequently further compromised [11].

Male gender was a strong predictor of better QoL, in contrast with the findings of the WHOQOL-HIV field test (WHOQOL-HIV Group, 2004). In agreement with our findings, Miners and colleagues [32] in a large study with a general population control group also found male gender to be associated with better quality of life. Male participants in our study were mostly MSM, and thus belonged to a group with a relatively lower intra-group stigmatisation of HIV [18]. This might also explain another of our findings, that being an MSM was associated with better QoL. In the qualitative part of the study, MSM participants described greater sense of belonging to a community of people living with HIV [18].

Being in a partnership was also found to be a strong predictor of QoL for total score, as well as several domains (social relations, psychological, level of independence, and environment). Grov and colleagues [15] identified loneliness as an important factor in terms of depressive feelings in older people living with HIV, and not being in a partnership may similarly contribute to lower QoL associated with isolation.

Not having grandchildren was associated with better QoL in some domains. Although our qualitative data indicate that having grandchildren was a source of comfort for some [18]. The quantitative data, however, suggest that being free from the demands of looking after grandchildren was a positive factor with respect to QoL.

Findings in relation to ethnicity are more complex. Multivariate analysis, after adjusting for being on benefits, showed that Black Ethnicity was associated with significantly better QoL in several domains, and when adjusted for the effect of being on benefits, being in the White ethnic group appeared to be a risk factor for low QoL rather than protective against it. More research with a larger sample size is needed to clarify the relationship between ethnicity and QoL.

There were some limitations to our investigation. Our sample was largely London-based, and included few participants from rural environments who might have experienced greater levels of isolation and thus lower quality of life. Also under-represented were non-White and non-Black ethnic groups (e.g. South Asians), and people of Black ethnicity who were not from African countries (e.g. Black Caribbean). Finally, our participants were recruited through HIV clinics and community organizations, thus excluding potential participants who were not engaged with services and support groups, and perhaps experiencing lower quality of life. Further research should aim at expanding the sample of participants, so as to strengthen and widen its findings.

Studies comparing people living with HIV with the general population have shown the former group to have worse quality of life [32], but we are not aware of research comparing PLWH with people with other chronic diseases. As HIV becomes a more manageable condition as a result of new therapies and more people are ageing with HIV, the question of similarities and differences with other chronic disorders is becoming an important one, but complicated by the continued stigmatisation of the virus and of those living with it, and by the increased likelihood that people ageing with HIV will also be living with other chronic disorders, and thus comparison populations should be included in further research.

Despite growing research into the psycho-social dimensions of ageing with HIV, our understanding of QoL among people living and ageing with HIV remains limited. Our analysis shows that while, overall, older people with HIV reported high levels of QoL and low levels of anxious or depressive feelings, specific variables were associated with QoL, suggesting areas of further intervention and research.

Although, in our sample, ethnicity in relation to QoL did not show clear-cut results, suggesting a complex association needing further research, other associations were more easily identifiable. Unfavourable economic factors were associated with lower QoL, and further research is required to understand the impact of financial concerns linked to ageing in older people living with HIV (e.g. changes to disability benefits). Gender was shown to be a predictor of QoL, with men reporting higher levels. The mechanisms explaining this finding are likely to include differential levels of stigma and feelings of isolation in heterosexual women with HIV, and further research is needed to elucidate the relevant factors. Finally, being in a partnership had a positive effect on QoL, and, surprisingly, not having grandchildren appeared to have a positive impact on some domains of QoL, another finding that requires further investigation, especially given the ageing of the population of people with HIV, and the increased proportion of heterosexuals with children within this population.

These findings, while requiring further exploration, suggest specific policy responses on the part of service providers and policy makers working with this population. We have listed elsewhere several recommendations for policy and practice (see Rosenfeld et al. [18]), but of these, the following are the most relevant given the findings reported here.

First, service providers should be aware of the low QoL and high levels of depressive and anxious feelings among specific groups in older people with HIV (such as those on low income or state benefits, women, those without partners, and those reporting memory concerns), and to be prepared to provide them with the appropriate help and support. Second, older people with HIV should be screened for depressive or anxious feelings, neurocognitive function, and QoL, as part of the regular monitoring of their health. Finally, service providers caring for older people with HIV should not assume that the medical care they receive is necessarily sufficient to identify or manage the psychological and social stressors that can lower their QoL.