Correlates of health-related quality of life among adults receiving combination antiretroviral therapy in coastal Kenya

As of 2017, 36.9 million people were living with HIV, with nearly 2 million new HIV infections in the same year [1]. Sub-Saharan Africa (SSA) continues to bear the greatest HIV-related burden as over half of people living with HIV/AIDS (PLWHA) worldwide reside in this region [1]. Nevertheless, strides have been made globally to increase the availability and accessibility of combined antiretroviral therapy (cART) for the management of HIV/AIDS even in low-resource settings of SSA [1]. In Kenya, cART coverage is reported as 75% among adults [2].

Owing to cART and its adherence, HIV-related morbidity and mortality have declined enormously [3, 4] and life expectancy of PLWHA has improved [5, 6]. Moreover, with the advent of cART, HIV – previously considered a fatal disease – is now managed like any other incurable chronic condition [7, 8]. Following the achieved milestones and the evolution of HIV to a chronic and potentially manageable disease, research interest is shifting to the understanding of the impact of this illness and its treatment on long-term outcomes such as Health-related Quality of Life (HRQoL).

HRQoL is multi-dimensional and can be understood as the patients’ subjective evaluation of themselves based on perception of the impact of illness and/or its treatment on their wellbeing [9, 10] in the physical, emotional, social, cognitive, functional and global domains. It is an important clinical metric of perceived wellbeing in PLWHA [11]. Evaluating HRQoL of PLWHA in research and clinical practice may provide important complementary information on patient wellbeing that is not captured by the often-used biological markers of immune status, namely cluster of differentiation-4 (CD4) cell count and serum viral load. These biological markers evaluate HIV progression, but rarely capture the patient’s experience of treatment benefit [12]. For PLWHA, attaining longer life expectancy with antiretroviral treatment is more salient if they can sustain optimum levels of HRQoL [13].

Several measures are available for assessing HRQoL of PLWHA. These include HIV-specific instruments such as the medical outcomes study-HIV [14], the HIV overview of problems evaluation system [15], the World Health Organization Quality of Life instrument module for international assessment of HIV/AIDS [16], and the Functional Assessment of HIV Infection [17]. There is no “gold standard” HRQoL instrument for use with PLWHA per se. The choice really depends on the purpose of the quality of life assessment and the most relevant domains of HRQoL that are specific to research or clinical questions. Noteworthy is that most of these existing HRQoL measures have been developed, validated and used in high-resource settings. However, validation work emerging from low-resource settings (e.g., Nyongesa et al. [18]), demonstrates that it is possible to contextually adapt and use these measures.

Various studies, mostly from high-resource settings (see review by Degroote et al. [8]), but also emerging reports from SSA [19‐22], have investigated factors associated with HRQoL among PLWHA. From these studies, factors related to HRQoL in PLWHA can broadly be categorized as: sociodemographic (such as, age, sex, socioeconomic status, and family situation; although mixed evidence); clinical and disease-related (such as, viral load, CD4 cell count, antiretroviral therapy, disclosure, and disease stage and symptoms); psychological (such as, depressive symptoms, coping strategy, social support, and HIV-related stigma); and behavioural (such as, smoking, alcohol and other substance abuse, and cART adherence). Most of these studies report a negative association between HRQOL and having depressive symptoms or experiencing HIV-related stigma; whereas mixed finding is reported for the other variables.

Although HRQoL is an important metric in the course of HIV disease [11], and should be a primary area of focus when providing care and support to PLWHA [23]; overall, little research has been conducted to look at HRQoL and its associated factors among PLWHA in the SSA context. This study aimed at investigating sociodemographic, clinical and disease-related, psychological, and behavioural factors as candidate correlates of HRQoL of adults living with HIV/AIDs from Coastal Kenya who are under cART management. To our knowledge, the present study is the first to investigate the HRQoL of PLHIV in the Coastal region of Kenya using an HIV-specific assessment measure. In this setting, with a population of 1.4 million people, the prevalence of adult HIV is estimated at 5% [24]. This study, in addition to emerging reports within SSA [19‐22] adds to the accumulating body of knowledge about HRQoL of PLWHA living in resource-limited settings. Studies on correlates of HRQoL are key to informing better clinical care practices, identifying those in need of extra support or context-specific priority areas for intervention. The latter is particularly important in settings where the disease burden is high, yet resources are limited.

In this cross-sectional study, a slightly modified FAHI scale with acceptable psychometric properties was used to explore correlates of HRQoL among PLWHA from the Kenyan coast. Consistent with previous findings from SSA [19, 22, 26] and elsewhere [8, 11]; this study found that presence of depressive symptoms and HIV-related stigma are associated with lower HRQoL of PLWHA, both in terms of strength of the association and the number of associated HRQOL domains (4/5 sub-scales and overall HRQoL). Because causality cannot be inferred based on the study design, future studies should explore these consistent findings to help discern the direction of the observed relationship (e.g., whether depressive symptoms cause poor HRQoL or vice-versa). This way, potential interventions, as recommended by Mekuria et al. [19] can be tested meaningfully.

In this study, there was an association between higher physician empathy and better HRQoL both overall and across most sub-scales. Since hardly any study has looked at physician empathy as a determinant of HRQoL in the context of HIV/AIDS, it is difficult to compare our findings. Nonetheless, our finding is comparable to findings from a recent study looking into the association between physician empathy and HRQoL in patients with a chronic condition [42]. There is a need for health care providers of people living with HIV to practice a patient-centred care approach. This involves a model of care that is caring, respectful and compassionate (CRC) which may contribute to a higher quality of life [43, 44]. The tenets of CRC care model are: i) provision of care with empathy, ii) effective communication amongst service providers and between service providers and patients, iii) respecting a patient’s decision in care, and iv) personal satisfaction in serving clients as a health professional.

Following a linear association, higher BMI was strongly associated with better HRQoL of adults living with HIV/AIDS from our setting. This finding corroborates findings from another study conducted in a low-resourced setting [45], but contrasts results from a study done in high-resourced settings [46]. George et al. [46] reported lower odds of having better quality of life with higher BMI (0.92; 95% CI 0.86, 0.97). We think that on the Kenyan Coast and other low-resourced settings, where levels of inequality and poverty are high, a higher BMI may just be a proxy marker for better living situation. For PLWHA who are required to eat nutritious food regularly (e.g., up to five servings a day is recommended), higher BMI may be indicative of regular food availability hence better HRQoL. In an Ethiopian study involving PLWHA, Mekuria et al. [19] found that sufficient nutritious food was associated with better HRQoL in most of the domains they assessed. Since in the West there is hardly food insecurity, the contrasting finding by George et al. [46] may be because of body size perception where being overweight or obese is generally negatively perceived and has been associated with outcomes like depression [47].

In this study, demographic characteristics of sex and participant current living situation correlated with HRQoL across 3/5 subscales and overall. Male sex compared to female was significantly associated with better Physical wellbeing, Functional and Global wellbeing, Social wellbeing and overall HRQoL. Males having better HRQoL has also been previously reported elsewhere [8, 48]. Better HRQoL scores among males in this study could be due to lesser societal demands hence better social environment compared to females who in highly patriarchal settings like ours, have additional roles e.g. caregiving and daily house chores yet must cope with HIV disease and its treatment. Living alone compared to living with family (immediate or through marriage) was significantly associated with lower Emotional wellbeing, Social wellbeing, Cognitive functioning and overall HRQoL. However, George et al. [46] comparing quality of life of participants living with family versus those living alone did not find any significant association. We think that a close family relationship contributes to less emotional problems, more social contact and better cognitive functioning (all potentially because of better social support). For instance, living with a stable partner, as family, has been associated with better mental health aspect of quality of life [49]. This finding points out the potential significant role of social support in ensuring the wellbeing of people living with chronic illnesses.

Age as a demographic characteristic was associated with only Emotional wellbeing, but not any other HRQoL domain in this study. In contrast, younger age has been associated with better HRQoL [19, 50]. A potential explanation of our finding is that increasing age could facilitate the development of effective coping strategies among the participants which in turn leads to lesser emotional problems related to living with HIV/AIDS.

Among the treatment characteristics, non-disclosure and presence of any opportunistic infection were significantly associated with lower HRQoL among study participants. Previous studies have also reported opportunistic infection [22, 51] as a correlate of HRQoL. In contrast to our finding, Préau et al. [52] reported that disclosing HIV-status was associated with poorer physical and mental health aspects of quality of life. Mainly because of social support, disclosure of seropositive status could be beneficial for the patient’s mental and physical health [53]. PLWHA should therefore be prepared, encouraged and supported by service providers to voluntarily disclose their HIV status to whom they feel comfortable. If a patient is not willing to disclose, services providers need to respect this decision, being aware that patients can be confronted with stigma and discrimination when disclosure is done involuntarily.

This study found that clinic inaccessibility was associated with lower social wellbeing, cognitive functioning and overall HRQoL. Hardly any study has explored this aspect among PLWHA making it difficult to compare this finding. A Vietnamese study [54] found a significant association between access to health care and HRQoL in univariate but not multivariable analysis. When primary HIV clinics are far, patients incur extra costs of accessing care such as transportation. Because of poverty, sometimes they may be forced to borrow from neighbours, friends or other social networks to cater for such costs. If unable to repay, this may impact on their social relations and overall functioning as they are concerned about repayment but also where next to seek help.

A longer duration on cART, another treatment characteristic, was associated with better emotional wellbeing. Similar findings are reported from a Portuguese study [55], a study conducted in South India [48] and Nigeria [56]. In contrast, a study conducted in the central region of Kenya [57] found longer duration on cART to be negatively associated with physical health summary but no significant associations were reported on the mental health summary. For the observed finding, the authors put forward an argument that treatment fatigue may affect adherence with longer duration on cART. In this study, we argue that continued use of cART gives assurance to the patient of better outcomes e.g. absence (or fewer) HIV-related symptoms hence lesser emotional disturbance. This proposition is strengthened by findings from a qualitative study in Uganda on quality of life among PLWHA [58]. In this study, one participant acknowledged the benefits of cART use by saying “they [cART] have really helped me; I used to be unwell with fevers, had no appetite and felt tired all the time. I feel stronger; have no fevers and my skin and body feel and look better”.

HRQoL of PLWHA receiving cART on the Kenyan Coast is influenced by several factors simultaneously. Depressive symptoms, HIV-related stigma, non-disclosure of HIV status, living alone, clinic inaccessibility, and presence of any current opportunistic infection were correlates of poor HRQoL. Higher physician empathy, male sex, longer duration on cART, higher BMI and age were correlates of better HRQoL.

In improving HRQoL of PLWHA, Mekuria et al. [19] have previously recommended interventions targeting to increase nutritional aspects, reduce depressive symptoms and HIV-related stigma. Additionally, in this context and similar settings, it is important for programme planners to start thinking about possible ways of making HIV-related services more accessible and strengthening the social support structure of PLWHA. For service providers, being empathetic to clients, addressing emerging opportunistic infections and continually encouraging clients to disclose their HIV-status (at least to trusted few) may go a long way in enhancing the wellbeing and treatment outcomes of PLWHA.