Quality of life of people living with HIV: a review of the literature

Term Paper 2009 18 Pages

Medicine - Public Health


Table of contents




Side effects of HAART and physical impairments

Nutrition and other lifestyle factors

Psychosocial factors and mental health




Since the advent of highly active antiretroviral therapy (HAART) in the mid 90s, the face of the HIV epidemic has changed considerably. Obvious progress has been made with respect to morbidity and mortality. But in spite of the effective medical treatment, quality of life (QOL) is still challenged by one of the most stigmatised diseases in the world. The aim of this review was therefore to sum up the up-to-date knowledge concerning QOL and to identify factors promoting QOL in HIV+ individuals. Another aim was to detect obvious gaps in knowledge that should be filled by further research activity.


The number of people living with HIV or AIDS is currently estimated to amount to 39.5 million worldwide (UNAIDS/WHO, 2006), and it is increasing by thousands every day. Since the advent of highly active antiretroviral therapy (HAART) in the mid 90s, the face of the HIV epidemic has changed considerably. There have been substantial decreases in both mortality and morbidity, and HIV is said to be on its way to a chronic condition. But still today, not everybody who is infected does receive adequate pharmacological treatment. This is especially the case in the developing world, but there are also barriers to treatment in countries that are rich in resources. Frequent reasons why people do not receive adequate pharmacological treatment are financial constraints, access disparities, interference of the therapeutic regimen with everyday life, low literacy, high pill burden, unstable housing, depression and substance use (Remien & Mellins, 2007). Even with treatment, quality of life (QOL) is challenged by one of the most stigmatised diseases in the world. Some of the threats to QOL are of psychosocial origin; others are created by the medical treatment. There are for example a number of side effects that constitute serious impairments to physical and psychological well-being and interfere with normal daily functioning (Remien & Mellins, 2007).

Up to now, the main focus of the literature has been the medical treatment of the infection, alongside with strategies to prevent new infections. There is an obvious lack of studies dealing with the QOL of those that are already infected. The aim of this review was therefore to sum up the existing up-to-date knowledge about QOL and to identify factors fostering QOL in HIV-infected individuals. Another aim was to detect obvious gaps in knowledge that should be filled by further research activity.


In March 2009, a literature research was carried out using both the Pubmed and the OVID search engines. The following terms were applied for separate searches: “HIV” AND “quality of life”, “HIV” AND “well-being”, “HIV” AND “mental health”. The literature research was restricted to sources of condensed knowledge such as reviews or meta-analyses published in the years 2007-2009. They had to be in either English, German or Spanish language. Using the described search strategy, more than 80 eligible review articles could be identified. In a second step, articles not taking into consideration psychological and social factors were filtered out because these elements were deemed crucial with respect to QOL. Furthermore, only articles that were available right away via the institutional access of Mainz University were selected. Finally, 21 articles were included (see table 1). In the following sections, various areas contributing to QOL are reviewed.

Table 1: Included articles: first author, year, method, and main topic

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Side effects of HAART and physical impairments

Burgoyne and Tan (2008) present an overview of side effects that may appear under HAART. They subsume them into two broad subgroups, with one subgroup referring to chronic and symptomatic toxicities and the other relating to acute and asymptomatic toxicities. The first group comprises relatively frequent impairments such as diarrhoea and gastrointestinal complaints, anaemia, lipodystrophy, peripheral neuropathy and injection site reactions. The symptoms accompanying these impairments can seriously affect physical capacity and role functioning of the individual, thus threatening QOL. According to Burgoyne and Tan, especially diarrhoea can have a significant negative impact on QOL. Constant gastrointestinal complaints may deteriora]te social and sexual functioning as well as one’s own health perceptions. Anaemia, which manifests as persisting fatigue and shortness of breath, has also serious harmful effects on well-being and overall functioning. Rash, hypersensitivity, pancreatitis, hepatotoxicity, and mostly transient neuropsychiatric symptoms such as dizziness belong to the acute toxicities of HAART. Some of the side-effects can be reversed when the antiretroviral treatment is stopped or altered, e.g. peripheral neuropathy. Others, such as diarrhoea can be managed by conservative measures, e.g. additional medication or a special diet.

Burgoyne and Tan (2008) further discuss the effect of HAART on QOL as a whole, comparing QOL of HIV-infected persons before and after the introduction of HAART. They argue that deteriorations in QOL that in the pre-HAART era were due to the progression of the illness, nowadays are replaced to a large extent by equally drastic deteriorations induced by the side effects of the modern antiretroviral treatment. They support their view by referring to the fact that QOL ratings remain stable under HAART, in spite of viral suppression and strengthening of the immune system. Usually, there is only little change in QOL, when HAART is started.

As a general formula for the relationship between side effects and QOL, they conclude from the literature that one discrete symptom or side effect has an impact of one-quarter to one-half effect size equivalent. According to this formula, the presence of three side effects or symptoms would result in a decline in QOL of one standard deviation, which normally equals a 10 - 20 % deterioration in scaled terms. Extending this relationship to the elimination of symptoms or side effects, Burgoyne and Tan (2008) expect a similar effect in the opposite direction. Thus, the elimination of a side effect should yield a QOL improvement of one- quarter to one-half effect size equivalent.

The other authors dealing with the side effects of HAART, mostly focus on so called body shape changes or morphological changes (Falutz, 2007; Guaraldi, Murri, Orlando, Squillace, Stentarelli, Zona, Garlassi & Martinez, 2008; Wohl & Brown, 2008). According to Falutz, body shape changes can be divided into central lipodystrophy (accumulation of central body fat) and peripheral lipoatrophy (decrease in peripheral body fat). Both are results of abnormalities of body-fat distribution. They are independent phenomena associated with marked metabolic changes. Burgoyne & Tan (2008) emphasise the heterogeneity of body shape changes. According to these authors, common features are fat loss in the cheeks, buttocks and extremities, which may result in the prominence of peripheral veins.

The etiology is complex, involving multiple factors such as viral parameters and characteristics of the affected individual (Falutz, 2007). With respect to antiretroviral drugs, the leading role of the so called NRTIs has been confirmed in the pathogenesis of lipoatrophy, while with respect to lipodystrophy a rather general effect of HAART is suggested (Wohl & Brown, 2008). All authors agree that the altered distribution of adipose tissue can have negative health effects and negative effects on QOL. Morphological changes and the accompanying metabolic changes increase the risk of atherosclerosis and other cardiovascular impairments. Another physical health consequence of lipodystrophy is an increased risk of pancreatitis ((Falutz, 2007; Wohl & Brown, 2008). Psychological consequences are a negative body image, an increased fear of complications, lowered self-esteem, anxiety and depression (Burgoyne & Tan, 2008; Guaraldi et al., 2008). With respect to social relations, a lot of the individuals undergoing morphological changes are anxious of stigma, or a forced disclosure of their infection because of their appearance (Burgoyne & Tan, 2008; Guaraldi et al., 2008). Through body shape changes, the disease becomes more visible to colleagues, friends, or family members. Moreover, persons with lipodystrophy or lipoatrophy frequently appear and feel less attractive or desirable. In that manner, social relations can be influenced in a very negative way (Guaraldi et al., 2008; Wohl & Brown, 2008). According to Guaraldi et al. (2008), facial lipoatrophy is the most stigmatising HAART-induced body shape change because the altered face cannot be masked by covering clothes.

Up to now, QOL has been only rarely measured in studies of HIV-infected patients with lipodystrophy (Guaraldi et al., 2008). Burgoyne and Tan (2008) report controversial findings. While qualitative studies confirmed apprehensive expectations of individuals with morphological changes, no clear and simple effect could be identified in studies using general measures of QOL. Burgoyne and Tan come to the conclusion that standard instruments are perhaps not appropriate to measure the impact of lipodystrophy on overall QOL. Guaraldi et al. (2008) also report some studies, where morphological changes were not associated with QOL. In spite of the mixed findings for general QOL, some relations have been established between lipodystrophy and more specific sub-areas of QOL, such as psychological functioning, mood, body image perception and satisfaction with body image, sexual activity, and health-related quality of life (Guaraldi et al., 2008).

One possible reason for the inconsistent findings is that all the reported studies had only fairly small sample sizes. Moreover, there is no consensus on how to measure QOL in HIV-infected individuals undergoing morphological changes. What are the appropriate methods to capture the impact of body fat changes? From the existing literature, Guaraldi et al. (2008) infer that body image as a subset of health-related QOL can be used to measure and examine the psychological consequences of lipodystrophy. Thus, more specific measures should be used rather than very general concepts. Another methodical problem is, however, that there is no standard definition of lipodystrophy either. Guaraldi et al.’s review indicates that the patient’s view or definition has more impact on QOL than the doctor’s definition.

Apart from their negative impact on body image and other facets of QOL, one last important consequence of body shape changes should be mentioned. Adherence to the antiretroviral therapy may decrease when body shape changes appear, or patients might be reluctant to even initiate medical therapy for fear of fat distribution abnormalities (Falutz, 2007; Guaraldi et al., 2008; Wohl & Brown, 2008). This could seriously endanger patients’ health in the long run. Interventions to reduce or eliminate lipodystrophy and lipoatrophy are also discussed in the literature. Falutz recommends the right choice of antiretroviral agents that carry a low risk of complications to prevent side effects from the beginning. When morphological changes have already set in, Wohl and Brown (2008) suggest discontinuation and substitution of the current medication in the case of peripheral lipoatrophy. In the case of central lipodystrophy, possible interventions to reduce body fat accumulation and the associated cardiovascular risk are alterations of lifestyle factors such as diet, exercise and anti-smoking interventions. Alternatives are pharmacological interventions and plastic surgery. Plastic surgery comprises both the implantation of synthetic fillers, especially when facial lipoatrophy is concerned, and liposuction in the case of central body fat accumulation (Guaraldi et al., 2008; Wohl & Brown, 2008). In their review, Guaraldi et al. (2008) point out that facial plastic surgery helped to improve QOL in patients affected by facial lipoatrophy. Even an improved aesthetic satisfaction with the whole body could be achieved after surgery.

Apart from the just discussed common side effects of HAART, there is another physical condition that reduces QOL in HIV-infected people substantially. In their review, Gray and Berger (2007) focus on the experience of pain. They point out that even though modern antiretroviral therapy is turning HIV/AIDS into a chronic and more or less manageable disease, only little progress has been made with regard to pain during an HIV-infection. Pain in HIV-patients is very frequent and can be caused by opportunistic infections, HIV- associated cancers or by the antiretroviral medical treatment. Among the most common syndromes leading to pain are peripheral neuropathy, headache, oral and pharyngeal pain, abdominal pain, chest pain and Karposi’s sarcoma. Women experience pain differently from men. They report more severe levels of pain, more frequent and widespread pain and pain of longer duration. This is due to biological, psychological and social differences between the genders. Pain is often under-diagnosed and poorly treated, both in the developed and the developing world. This deficits are even more pronounced among women. Women may also experience more barriers to an effective treatment. General barriers to an effective management of pain in HIV+ patients are a lack of knowledge of health care providers, the reluctance to prescribe potent medication or accompanying antidepressants, and concerns about drug addiction or abuse. Especially health care providers in the developing world need training on basic pharmacology and effective pain therapy. The best approach in treating pain involves multiple disciplines: pharmacological, psychotherapeutic, cognitive-behavioural, anaesthetic, neurosurgical, and rehabilitative strategies should be applied at the same time when appropriate.



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Johannes Gutenberg University Mainz – Institut für Medizinische Biometrie, Epidemiologie und Informatik




Title: Quality of life of people living with HIV: a review of the literature