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Factors Affecting Quality of Life in Patients With HIV Infection

Antoine Douaihy, MD and Nina Singh, MD
Originally published in The AIDS Reader 11(9):444-449, 2001

Abstract and Introduction

Abstract

Given the longevity achievable with current prophylactic and therapeutic strategies for persons with HIV infection, quality of life (QOL) has emerged as a significant medical outcome measure, and its enhancement as an important goal. This review highlights current knowledge about the relevance and complexity of physical, psychological, and social factors as determinants of health-related quality of life (HRQOL) in HIV-infected persons. Existing data suggest physical manifestations, antiretroviral therapy, psychological well-being, social support systems, coping strategies, spiritual well-being, and psychiatric comorbidities are important predictors of QOL in this population. Health care professionals are encouraged to become familiar with the full spectrum of predictors of HRQOL, which may eventually contribute to the development of multiple entry points for interventions in promoting QOL in these patients. Identifying variables influencing QOL among diverse groups, particularly women, injection drug users, and adolescents, and designing effective interventions specific to the social and psychological well-being of HIV-infected individuals are areas for research.

Introduction

The availability and efficacy of medical treatment, particularly the combination of antiretroviral therapeutic strategies, have delayed disease progression and prolonged survival in HIV-infected individuals. Consequently, the impact of HIV infection on the dimensions of quality of life (QOL), including physical and emotional well-being, social support systems, and life roles, has emerged as a key issue for persons infected with HIV. This article summarizes current knowledge and clinically relevant data concerning factors affecting the QOL of these patients. In particular, we review the QOL assessment and measures; discuss the impact of medical, psychosocial, cultural, and spiritual factors on QOL; and outline future directions for research with respect to QOL in the HIV setting.

Assessment of Quality of Life in HIV-Infected Persons

Calman1 has defined QOL as congruence between one's dreams, ambitions, hopes for the future, present lifestyle, and experiences. This definition of QOL largely parallels the World Health Organization definition of health.2 QOL in a clinical setting includes those dimensions of life directly affected by the overall state of health and is often referred to as health-related quality of life (HRQOL).3 HRQOL is a multidimensional concept that includes global health perceptions, symptom status, functional status, biologic and physiologic variables, individual and environmental characteristics, and overall QOL.4 The presence of symptoms has had a strong impact on all measured dimensions of HRQOL in HIV-infected patients.5 A secondary analysis of 7 major dimensions of HRQOL suggested that symptom status, functional status, and general health perceptions were key.6 Improving overall HRQOL of patients with HIV infection through symptom control and enhancement of positive general health perceptions, therefore, represents an important area of therapeutic intervention.

The instruments used to measure QOL may be divided into generic versus HIV-specific, profile versus single-index, and self-administered versus interview-administered. Several disease-specific instruments have been employed to measure HRQOL in HIV-infected persons, including the Medical Outcomes Study, HIV version (MOS-HIV), which added scales specific to dysfunction related to HIV disease; the Multidimensional Quality of Life Questionnaire (MQOL-HIV); the HIV/AIDS-Targeted Quality of Life; the Quality Adjustment Treatment without symptoms and toxicity; the HIV Quality Audit Marker; the HIV Quality of Life; and the HIV Overview of Problems-Evaluation System.7-11

The MOS-HIV is one of the most widely used measures for assessing HRQOL in HIV-infected patients.8 The quality of well-being scale measures mobility, physical activity, and social activity and appears to be better able to capture outcomes of serious illness, such as AIDS, over time than the Medical Outcomes Study Short-Form36 (MOS SF-36).12 The MOS SF-20 appears to be a reliable and valid instrument of HRQOL for women with HIV infection.9 A randomized study comparing MOS-HIV and MQOL-HIV, which included socioeconomic aspects of HRQOL specific to HIV-infected patients, showed that while neither instrument successfully distinguished between disease stages, the MOS-HIV was capable of distinguishing between patients who were receiving antiretroviral treatment and those who were not.7 These results likely reflect a possible impact of antiretroviral treatment on health status and QOL. The Karnofsky performance scale has been validated in AIDS populations and has been used to measure functional status but not QOL.13

Impact of Medical Aspects of HIV Infection

Constitutional symptoms and opportunistic infections

Nonspecific constitutional symptoms including fatigue, night sweats, anorexia, intermittent diarrhea, and/or weight loss are frequently encountered during the course of HIV infection. The presence, frequency, and severity of constitutional symptoms have been shown to correlate with HRQOL.14 Severe fatigue, described as "feeling exhausted," had a strong negative correlation with all QOL dimensions of physical and mental health.14 Anorexia/nausea and night sweats correlated with worse scores on physical function, role function, pain, and energy scales. Surprisingly, weight loss had a more limited impact on QOL than other constitutional symptoms, including feverishness.14 Notably, the impact of advanced HIV infection on HRQOL has been shown to be more significant than that of other chronic diseases, such as cancer and depression.5,15

Opportunistic infections may further compromise patient QOL. The QOL of patients with Pneumocystis carinii pneumonia (PCP) was lower than that of HIV-infected persons with other diagnoses.16 The largest difference was noted in role functioning, suggesting that a diagnosis of PCP adversely affected the patient's ability to maintain good occupational functioning.16 Thus, aggressive attempts at preventing such opportunistic infections have the potential for enhancing QOL in these patients.

Hospitalizations

Most HIV-infected persons require hospitalization at some point in their illness. HRQOL correlated with lower CD4[+] cell count, symptom severity, length of hospital stay, and disease progression.17 Emotional well-being correlated negatively with polysubstance abuse, length of hospital stay, and number of disability days related to illness in hospitalized patients who have HIV infection. The physical functioning and emotional well-being were also adversely affected by the severity of illness in the same population.18

Malnutrition

Multiple clinical manifestations of HIV infection may contribute to reduced HRQOL. Foremost among these is malnutrition. Malnutrition may often be present early in the course of infection and may predate any significant deficiency in the immune system. Indeed, wasting presenting as weight loss is one of the most common initial AIDS-defining diagnoses. Body cell mass has been shown to correlate adversely with QOL, independent of the CD4 cell count. The QOL dimension that best correlated with nutritional depletion was decreased functional performance.19,20 In advanced HIV infection, severe wasting or progressive malnutrition has been strongly associated with the risk of dying.21 Indeed, depletion of body cell mass was associated with shortened survival, independent of the CD4[+] cell count.22

Diarrhea

Chronic diarrhea, reported in 25% to 50% of HIV-infected persons, may cause major metabolic and nutritional deficiencies and has been shown to adversely affect the patient's sense of well-being and QOL.23,24 Significant deterioration in social activity, daily living activity, energy, and general health were observed in patients with chronic diarrhea.23 Thorough nutritional assessment and aggressive interventions to treat wasting may potentially enhance the QOL.25

Anemia

Anemia in the HIV-infected patient has been documented to be an independent predictor of shortened survival.26 Fatigue, the main symptom of anemia, had a significant negative impact on QOL.27 High hematocrit levels in patients with disseminated Mycobacterium avium complex infection were associated with decreased fatigue and improvement of Karnofsky performance score but not with a significant improvement in overall QOL.28

Pain

Pain contributes considerably to psychological and functional morbidity in HIV-infected patients.29 Its prevalence depends on the stage of disease and the care setting. Significant pain has an independent negative effect on the patient's QOL, regardless of the treatment setting and the stage of disease.30

Other Comorbid Conditions

The prevalence of HIV dementia ranges from less than 1% in medically asymptomatic patients to 15% to 20% in patients with advanced HIV disease.31 Dementia may be an initial manifestation of AIDS.32 Typically, patients are unable to work and may be unable to care for themselves.31 Insomnia in patients with HIV infection is widely prevalent and multifactorial, especially in those with cognitive impairment, and has a potential to adversely affect QOL.33,34

Sexual Dysfunction

Sexual dysfunction in HIV-seropositive men is a common complaint. The men who reported sexual dysfunction rated their QOL lower than the men who were functioning sexually.35 Hypogonadism in HIV-infected individuals can lead to body cell mass depletion and a compromised QOL.36,37 Testosterone replacement therapy in HIV-infected men with hypogonadism may have some benefits, including strengthened sexual desire, improved sexual performance, and enhanced sense of well-being.38

Hepatitis C virus infection. Hepatitis C virus (HCV) infection has been documented in up to 33% of patients with HIV infection.39 Coinfection with HIV and HCV resulted in earlier onset of cirrhosis and liver failure.39 HCV seropositivity has been shown to be a negative prognostic factor for response to antiretroviral therapy.40 Furthermore, the risk of HIV progression or death in HCV-seropositive patients was 3 times greater than in HCV-seronegative patients.40 Several studies have documented a reduction in QOL in patients with chronic HCV infection.41

Impact of Antiretroviral Therapy

The goals of antiretroviral therapy include durable and maximal suppression of viral replication and a reduction of HIV-related morbidity and mortality. However, there are concerns that adverse drug effects; earlier development of drug resistance; and unknown long-term toxicity and efficacy of HAART in the asymptomatic, chronically infected patient may have a negative impact on QOL. Negative attributions about the effects of antiretroviral therapy, using the medication attribution scale, were found to significantly correlate with HRQOL scores even when controlled for the patient's perceived physical health status.42 HAART regimens used in all stages of HIV infection may cause a significant short-term decline in HRQOL scores, including scores for social function, and an increase in reported symptoms attributed essentially to medication side effects. However, the benefits, including improved survival, increased viral suppression, and delayed disease progression, were ultimately demonstrated.43-47 The short-term decline in QOL was reversed with the discontinuation of the medication responsible for the changes.44 Even continued treatment using the same antiretroviral agent led to an improvement in all dimensions of the MOS-HIV.48

Adherence to antiretroviral therapy is crucial in accruing the long-term benefits of therapy.49,50 Younger age, active drug use or alcoholism, inadequate housing, psychiatric illness, extreme pain, no change in health status, major life crises, and extreme anxiety have been shown to predict poor adherence.43,51-54 Satisfaction with the social support system, problem-focused coping, and active behavioral coping significantly increased the likelihood of adherence among HIV-infected persons.55 On the contrary, loss of motivation, hopelessness, and avoidant coping behavior correlated with nonadherence.55

Exercise training appears to considerably improve aerobic function and overall QOL without any impact on immune indices.56

Impact of Psychosocial Factors

The impact of social, psychological, and spiritual factors on QOL in HIV infection has been well recognized.57-61

Social Support

Social support for patients with HIV/AIDS has shown a strong potential to influence HRQOL. The 3 major components of social support are emotional, tangible, and informational support.62,63 Distinction among the different types of social support is relevant, since their functions may not be necessarily interchangeable. Emotionally sustaining functions of social support, which serve to fulfill and gratify one's need for nurturance, belonging, and alliance, are well recognized to buffer stress in non-HIV settings.63,64 At least 2 studies have reported that emotionally sustaining support was considered more desirable and was more often used than other forms of support.65,66 In another study, however, satisfaction with tangible or informational support was a stronger predictor of better QOL than was satisfaction with emotional support.59 Similar findings have been reported in a study comprising gay men in San Francisco, where informational support was considered particularly critical for patients experiencing HIV-related symptoms.62

Older patients with HIV infection have been noted to be less satisfied with their social support resources and more likely to use maladaptive coping strategies.59 These results are strikingly different from those in the non-HIV settings, where older patients with chronic illnesses demonstrated less psychological stress and better coping skills than did their younger counterparts.67 The proposed explanation is that older patients, by virtue of having faced life stresses before, are more likely to have acquired effective stress management skills, which may be beneficial when faced with a chronic illness.67,68 Older HIV-infected patients, on the other hand, may be more vulnerable to social isolation, may have less access to community social support resources, or may themselves choose not to access such resources.

Coping

Coping is another variable influencing QOL in HIV infection. Pearlin and Schooler69 have defined coping as the cognitive and behavioral effort made to tolerate, reduce, or master demands that challenge or exceed a person's resources. Individuals who confronted stress with problem-solving and behavior-modifying approaches had a significantly better QOL than those not using such coping skills.59 It has been proposed that education and behaviorally oriented interventions that enhance problem solving and active decision making are likely to be more beneficial than emotionally supportive interventions that encourage passive acceptance of the illness.66 Coping by denial (avoidance) was associated with a significantly lower QOL in a previous study.59 Although denial has been shown to be an effective coping method in non-HIV settings, the preponderance of studies in HIV settings has suggested otherwise.59,70,71 Denial has been shown to correlate with low self-esteem and depression in HIV patients.71 Indeed, coping by denial may be an expression of helplessness, anger, or depression, and these patients may, in fact, be in need of psychological intervention.71

Cognitive behavioral stress management in HIV-symptomatic gay men, which uses group interventions to target maladaptive cognitions, enhance social support, and facilitate more active coping strategies, increased their cognitive coping skills and significantly improved social support.72 Cognitive behavioral stress management interventions have also led to alleviation of dysphoria and anxiety.72,73 The effects of a similar therapeutic model in symptomatic HIV-positive men increased free testosterone levels and effectively reduced psychological distress.74

In another report, however, cognitive behavioral interventions using either guided imagery or progressive muscle relaxation in HIV-positive individuals at different stages have significantly improved perceived health status but not QOL.75 Coping effectiveness training to help patients develop coping strategies corresponding to specific stressful situations has been shown to improve QOL.16

Spirituality

Spirituality is an important contributor to feelings of well-being. Spirituality among HIV-infected individuals was perceived as a bridge between hopelessness and meaningfulness in life.61,76-78 Creating meaning and purpose in life more than religious experiences was found to correlate with psychological well-being in a large sample of African American men and women with HIV/AIDS.60 Patients with HIV infection have reported a strong will to live and believed that their QOL with HIV infection was better than it was before the diagnosis.79 Resilience factors associated with adaptation to HIV disease were examined in 200 patients and revealed that high "hardiness" was related to lower psychological distress levels and higher perceived QOL in physical and mental health and in overall functioning domains.80

Depression

Comorbid psychiatric illnesses, including depression, are common in HIV-infected patients.81,82 The prevalence of depression in HIV-infected clinic populations has ranged from 22% to 38%.81,83 Younger age, unemployment, lack of health insurance, low CD4[+] cell counts, HIV-related symptoms, not having a partner, poor quality of social support, and use of noninjection drugs were significant predictors of depression in one study.84 Patients with HIV infection who are older than 35 years are more likely to suffer from depression, anxiety, confusion, and fatigue. Insomnia, pain, and emotional control correlated with depression.85 Physical limitations may also contribute to depression; after controlling for disease stage, physical symptoms, and CD4 cell counts, the degree of physical limitation in one study predicted depression.86

The impact of psychiatric comorbidities, specifically depression, on the HRQOL of patients with HIV disease has been well documented.87-89 The presence of a major psychiatric disorder (independent of HIV-related disease progression) was associated with a negative impact on HRQOL dimensions of mental health, social functioning, and general health perceptions but not on physical health, role functioning, or pain.87 A larger study showed that patients with comorbid mood disorder had significantly worse functioning and well-being than those without mood disorder.88

Depression in women with AIDS was associated with the number of reported physical symptoms and poor quality of social support.90 A survey in a group of largely poor, black or Hispanic, HIV-symptomatic women showed that they were more affected by anxiety than by depression. However, both anxiety and depression, which coexisted, correlated with poorer QOL.91

Focal individual psychotherapies and psychopharmacotherapy for depressed HIV-positive patients have demonstrated efficacy in alleviating depression.92,93 Both a social support group and a cognitive behavioral group were effective in reducing depression in HIV-positive men, although the social support intervention reduced depression more significantly.94 Treatment of depression in patients with HIV disease may not prolong life but can lower the risk of suicide and improve QOL, both directly and through increased adherence to complex medical regimens.95

Conclusion

This review highlights the complex manner in which biologic, psychological, and social factors may create specific stressors and evoke a diverse array of responses in HIV-infected persons. The patients' perceptions, beliefs, and appraisals about HIV infection are major determinants of adaptational outcomes. The findings from this review have implications for future research endeavors and clinical practice.

The existing research examining QOL issues has focused primarily on homosexual male populations. Although QOL did not correlate with gender,59 some factors, such as role of family caregiver and social gender expectations, may influence QOL differently in HIV-infected women.96,97 HIV-infected women reported worse physical functioning than HIV-infected men, even though men had lower CD4 cell counts.96 Therefore, efforts focused toward assessment of variables influencing the QOL among diverse groups of HIV-infected patients, including women, injection drug users, and adolescents, are warranted.

Development of a specific HRQOL instrument that is sensitive to the cultural and ethnic background of the patients should also be considered. Additional research should identify and evaluate the impact of cognitive behavioral interventions on the psychosocial factors interfering with QOL in these diverse subsets of patients with HIV infection. Relations between changes in the psychosocial variables and the course of HIV infection need to be examined.

From the clinical practice perspective, health care providers should strive to establish a trusting relationship with their patients in order to formulate a negotiated treatment plan involving patients' active participation. The unpredictability of the course of the illness and the sudden and often reversible disruptions in psychological and physical states require an ongoing, dynamic assessment before any interventions are made. Facilitating access to care, including mental health care, for all patients with HIV infection, especially the disadvantaged, should be a priority. Psychosocial interventions aimed at alleviating depression, enhancing the patient's understanding of effective coping patterns, increasing self-efficacy, and developing strategies to foster communication with a support system and with health care providers may potentially result in higher QOL outcomes. The ultimate goal for treatment is not merely to promote longevity but also to enhance the quality of life.

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Dr. Douaihy is assistant professor and medical director of the dual diagnosis unit in the department of psychiatry, Western Psychiatric Institute and Clinic, Pittsburgh, and Dr Singh is associate professor of medicine at the University of Pittsburgh Medical Center, Pittsburgh, and director of the HIV clinic at the Pittsburgh VA Medical Center.

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