As Sources Of Distress

Other factors causing distress are the multiple complications resulting from immunological suppression, including visual loss, neurological illness, and fears of progressive health decline and changes in one's ability to care for one's self independently. Cytomegalovirus (CMV) retinopathy is one of the most distressing complications of HIV disease, as it results in vision loss with accompanying social isolation, loss of independence, and loss of function.

Visual Loss as a Source of Distress

The advent of HAART therapy has altered the natural progression of HIV and has changed the incidence, natural history, management, and sequelae of HIV-associated retinopathy, especially CMV-associated retinopathy. Before use of HAART, CMV retinitis was common, occurring in 20%-40% of seropositive patients. Patients were relegated to indefinite intravenous therapy, and between 25% and 50% suffered retinal detachment. Survival after development of CMV retinitis was 6-10 months. The incidence of CMV retinitis declined by approximately 80% after the advent of HAART therapy, and mean survival has increased to over 1 year from time ofdiagnosis (Holbrook et al., 2003; Goldberg et al., 2005). However, visual loss and blindness from multiple etiologies are still significant causes for concern and sources of distress for patients with HIV (Ng et al., 2000; Kestelyn and Cunningham 2001; Hill and Dubey 2002; Oette et al., 2005).

Specific studies examining the quality of life and distress experienced by persons with visual loss have not been performed among persons with HIV disease. However, data on distress among patients with macular degeneration and other acquired forms of visual loss may be used to better understand the sense of isolation, psychological distress, and limitations these patients experience on a routine basis. Data from patients with acquired macular degeneration indicated a strong association between decline in vision and functional impairment, along with high rates of depression, anxiety, and emotional distress (Berman and Brodaty, 2006). In a study focusing on patients' attitudes toward visual loss from subfoveal choroidal neo-vascularization, patients reported that they would rather suffer medical illnesses such as dialysis-dependent renal failure and AIDS than visual impairment (Bass et al., 2004). Similar findings have been noted in studies of diabetes mellitus-associated visual loss (Cox et al., 1998). Clearly, across multiple medical conditions, acquired visual loss has a profound impact on self-perception of overall health-related quality of life, distress, and suffering.

Neurological Decline and HIV Disease

Cognitive disorders, vacuolar myelopathy, and sensory neuropathies are the most common neurological disorders in patients with HIV disease and are a great source of fear and distress in this population. One of the most disturbing aspects of advancing HIV disease is the prospect of progressive physical and cognitive impairment leading to eventual complete incapacity. Since the advent of HAART therapy, however, there has been an approximate 50% reduction in HIV-related neurological complications (Maschke et al., 2000; Sacktor, 2002). Distress and fear of loss of independence and functionality continue among patients nonetheless.

Mapou and colleagues (1993) studied neuropsy-chological performance of 79 military medical beneficiaries infected with HIV and that of 27 HIVseronegative control subjects. Seropositive subjects who complained of subjective difficulties had more deficits in attention, response speed, motor function, and memory than those not reporting difficulties. Seropositive individuals also had increased rates of anxiety and depression, illustrating the need for screening for both disturbances in seropositive individuals, as each may become a significant source of distress. The pathophysiology and potential treatment of dementia are discussed further in Chapters 3, 10, and 19.

Pain and Distress in HIV Disease

Pain is an incapacitating symptom in many people with HIV and AIDS, and untreated pain leads to an increase in psychological distress and a reduction in quality of life. Sources of pain are varied and range from neuropathic pain to chronic pain of malignancy, and all types of pain are associated with increased suicidal risk. Pain is undertreated particularly in patients with HIV and AIDS, in part because of the common prevalence of substance abuse disorder. Pain is especially common in this setting and ranges from 28% to 97% across various studies (Schoefferman, 1988; Lebovits et al., 1989; McCormack et al., 1993; Reiterand Kudler, 1996).

Abdominal pain and neuropathic pain were the most common pain complaints in one study at a pain consultation service; other causes included odyno-phagia, dysphagia, headache, cutaneous pain, mus-culoskeletal pain, and postherpetic neuralgia (Newshan and Wainapel, 1993). Inadequate pain assessment is a major factor in the undertreatment of pain, and use of standardized pain assessment measures may assist in both assessment and treatment. Practitioners need to be educated to address myths such as (a) people overestimate their pain; (b) minority groups exaggerate their pain complaints; (c) people with a past history of addiction routinely lie about pain to secure drugs; (d) pain is often psychogenic in etiology; and (e) the etiology of pain remains obscure in most cases. In fact, patients have been shown to be reluctant to volunteer pain complaints. Thus routine assessment is needed (Von Roenn et al., 1993), with instruments such as the Wisconsin Brief Pain Inventory (BPI), which measures adequacy of analgesia and impact of pain on related psychosocial factors. Further discussion of pain assessment and management can be found in Chapters 20 and 30, which deal with neurological complications in HIV and palliative care for persons with HIV, respectively.

Cardiopulmonary Disease in HIV

HIV-associated cardiomyopathy can be a direct result of HIV disease, HIV treatment, comorbid conditions, and other etiologies. Cardiomyopathy has been identified in up to 20% of HIV-seropositive patients (Fisher and Lipschultz, 2001). It appears to have a more pernicious course in HIV-positive patients, with symptoms including dyspnea, peripheral and pulmonary edema, hepatosplenomegaly, and arrhythmias (Currie et al., 1994). Dilated cardiomyopathy is the most frequently identified cardiac disease associated with HIV and is an independent predictor of mortality, but other manifestations include myocarditis, bacterial and fungal endocarditis, pulmonary hypertension, malignancy, accelerated atherosclerosis, and autonomic dysfunction (Dakin et al., 2006).

Similarly, respiratory events and illnesses such as opportunistic infections, tuberculosis, malignancies, adult respiratory distress syndrome, and pulmonary fibrosis (Rosen et al., 1997) remain common in HIVseropositive populations, especially among those with CD4 counts <200/mm3 and injection drug abusers. Importantly, the risk of these disorders appears to increase with advancing HIV disease despite the widespread use of antibiotic prophylaxis (Wallace et al., 1993; Hirschtick et al., 1995).

Distress in these populations is created by both the psychological implications of advancing HIV disease and the imposition of severe physical limitations related to cardiopulmonary disease. Such limitations further isolate this population and limit individuals' ability to perform previously enjoyable coping activities such as exercise. In advanced cases, they impinge directly on patients' ability to maintain independence and perform activities of daily living, serving as a constant reminder of impending mortality.

Diarrhea in HIV Disease

Another common potential source of distress among HIV-seropositive patients is bacterial diarrhea, which has been noted to predict increased use of hospital resources, longer hospital admissions, and an increased prevalence of opportunistic infections such as Pneumocystis carinii pneumonia. Clostridium difficile colitis and associated diarrhea were the etiology in approximately 32% of study patients in a large, Chicago-based, public hospital study. It appears that this disorder is more likely to present among advanced-HIV patients (Pulvirenti et al., 2002). Other notable causes include Shigella, Campylobacter, and Salmonella species, which may reflect progressive deficits in mucosal immune function in advanced HIV disease (Sanchez et al., 2005).

From a mental health standpoint, bacterial diarrhea can cause significant distress in that it both limits environmental freedom and self-sufficiency and serves as a marker and reminder of advancing disease. Fears of loss of bowel control and fecal incontinence further isolate a high-risk population from available social support. These conditions can also be a source of HIV-associated wasting and general decline. While no specific studies have addressed the issue of distress in this population, in our experience the associated distress and impairment from chronic diarrhea can be profoundly embarrassing, with significant limitation in life satisfaction.

Itching in HIV Disease

Medical sources of distress are not limited to major organ systems such as cardiorespiratory and gastrointestinal systems but include a variety of scenarios and organ systems. Pruritus is a common manifestation of advancing liver disease, which is discussed further in the context of HIV in Chapter 33. Likewise, renal disease with associated uremia can produce significant symptoms of itching; renal complications associated with HIV disease are covered more extensively in Chapter 34. Studies of distress in relation to HIV disease and itching have not been performed, but quality-of-life studies of chronic urticarial illness have demonstrated marked reductions in quality of life in terms of both social functioning and emotional capacity (Staubach et al., 2006).


One area that has been linked to distress and a reduction in quality of life in HIV is insomnia. Complaints of lack of sleep from persons with HIV disease are ubiquitous, but etiologies are varied and often include a combination of comorbid Axis I conditions, medical conditions affecting sleep quality, and potentially a direct role of HIV on the brain. In a review of insomnia in the setting of HIV, Reid and Dwyer (2005) noted that up to 60% ofHIV-positive individuals experienced sleep disturbances, and greater psychological distress appeared to be related to greater sleep difficulties and lower numbers of CD3 and CD8 cells. This review highlights the importance of effective interventions designed to improve sleep quality and in turn potentially reduce distress and improve life quality. Further details of HIV-associated sleep abnormalities are addressed in Chapter 15.


Fatigue is one of the most limiting of the HIV syndromes in terms of quality of life and its incremental impact on dealing effectively with advancing HIV disease, comorbid depression, and hepatitis C coin-fection. HIV-related fatigue decreases functional status, which in turn can lead to symptoms of isolation, inability to perform required self-care, and nonad-herence to medications. In fact, fatigue, along with neurological symptoms, is one of two domains that independently predicts functional decline in instrumental activities of daily living, even when controlling for sociodemographic variables (Wilson and Cleary, 1997).

In a cross-sectional survey of ambulatory AIDS patients, Breitbart and colleagues (1998) found that over 50% of respondents had fatigue according to self-report with the Memorial Symptom Assessment Scale. Women appeared significantly more likely to experience fatigue than men, and fatigue was associated with several other variables, including the number of AIDS-related physical symptoms, the current treatment of HIV disease, anemia, and pain. Those subjects reporting significant fatigue suffered increased rates of both psychological distress and lower quality of life across several standardized rating scales (Breitbart etal., 1998).

Fatigue also plays an important role in HCV infection, as fatigue is a common complaint among sufferers of HCV both prior to and during treatment with biological agents such as interferon-based therapies. Four hundred and eighty-four HIV-seropositive subjects participated in a self-report trial which confirmed that HCV-coinfected patients demonstrated significantly more elements of distress compared to the HIV-only group in social, psychological, and biological arenas. The patients were also more likely to be in unstable social situations and to experience depression, fatigue, and reduced quality of life (Braitstein et al., 2005).

The treatment of fatigue is an important area for psychiatrists treating patients with HIV, as it can directly improve quality of life, alleviate distress, and improve functioning. Breitbart and colleagues (2001) and others have described effective and safe treatments with either methylphenidate or pemoline. The role of antidepressants, androgenic steroids, and modafinil in treating fatigue has also been examined (Rabkin et al., 2004a, 2004b). Further discussion of HIV-associated fatigue can be found in Chapter 16.

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