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      Health-related quality of life in patients with human immunodeficiency virus infection in the United States: results from the HIV Cost and Services Utilization Study.

      The American Journal of Medicine
      Adult, CD4 Lymphocyte Count, Cost-Benefit Analysis, Female, HIV Infections, diagnosis, economics, psychology, Health Resources, utilization, Health Status, Humans, Insurance, Health, Male, Mental Health, Middle Aged, Quality of Life, Risk, Severity of Illness Index, Socioeconomic Factors, United States

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          Abstract

          To measure health-related quality of life among adult patients with human immunodeficiency virus (HIV) disease; to compare the health-related quality of life of adults with HIV with that of the general population and with patients with other chronic conditions; and to determine the associations of demographic variables and disease severity with health-related quality of life. We studied 2,864 HIV-infected adults participating in the HIV Cost and Services Utilization Study, a probability sample of adults with HIV receiving health care in the contiguous United States (excluding military hospitals, prisons, or emergency rooms). A battery of 28 items covering eight domains of health (physical functioning, emotional well-being, role functioning, pain, general health perceptions, social functioning, energy, disability days) was administered. The eight domains were combined into physical and mental health summary scores. SF-36 physical functioning and emotional well-being scales were compared with the US general population and patients with other chronic diseases on a 0 to 100 scale. Physical functioning was about the same for adults with asymptomatic HIV disease as for the US population [mean (+/- SD) of 92+/-16 versus 90+/-17) but was much worse for those with symptomatic HIV disease (76+/-28) or who met criteria for the acquired immunodeficiency syndrome (AIDS; 58+/-31). Patients with AIDS had worse physical functioning than those with other chronic diseases (epilepsy, gastroesophageal reflux disease, clinically localized prostate cancer, clinical depression, diabetes) for which comparable data were available. Emotional well-being was comparable among patients with various stages of HIV disease (asymptomatic, 62+/-9; symptomatic, 59+/-11; AIDS, 59+/-11), but was significantly worse than the general population and patients with other chronic diseases except depression. In multivariate analyses, HIV-related symptoms were strongly associated with physical and mental health, whereas race, sex, health insurance status, disease stage, and CD4 count were at most weakly associated with physical and mental health. There is substantial morbidity associated with HIV disease in adults. The variability in health-related quality of life according to disease progression is relevant for health policy and allocation of resources, and merits the attention of clinicians who treat patients with HIV disease.

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          A Comparative Review of Generic Quality-of-Life Instruments

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            Quality of life in persons with human immunodeficiency virus infection: measurement by the Medical Outcomes Study instrument.

            To assess the reliability and validity of the Medical Outcomes Study (MOS) Short Form Health Survey as an indicator for quality of life in patients infected with the human immunodeficiency virus (HIV). Patient interview survey. The AIDS Health Services Program in seven sites: Newark and Jersey City, New Jersey; Nassau County, New York; Atlanta, Georgia; Dallas, Texas; Fort Lauderdale and Miami, Florida; New Orleans, Louisiana; and Seattle, Washington. Patients (520) with HIV infection receiving health services at one of the above sites. All components of the MOS Short Form Health Survey were included in the interview. Minor modifications were made to adapt the survey to the particular circumstances of the study. Measured sociodemographic characteristics included age, sex, race, intravenous drug use, and education. Symptoms were assessed by closed-ended questions concerning memory, seizure, weakness or numbness, fever, chills, diaphoreses, dyspnea, diarrhea, and weight loss. Information on the frequency of symptoms was also collected. History of Pneumocystis carinii pneumonia and Kaposi sarcoma was noted. The sociodemographic characteristics resemble those of patients with the acquired immunodeficiency syndrome (AIDS) reported to the Centers for Disease Control (CDC): mean age, 36; men, 89%; nonwhite, 31%; intravenous drug use, 34%. Neurologic symptoms (memory trouble, seizures, weakness or numbness) occurred in 71% of patients; constitutional symptoms (fever, chills, night sweats, weight loss) in 69%; dyspnea in 50%; and diarrhea in 47%. Although older age, female sex, nonwhite race, and intravenous drug use were associated with lower MOS scores in several areas, the strongest single or adjusted indicator of lower MOS scores was the presence of symptoms. Finally, patients with HIV infection had significantly lower scores than did previously reported patients with other chronic medical conditions (P less than 0.001). The MOS survey is a reliable measure of quality of life for patients with HIV infection. These patients tend to have low scores, suggesting validity of the survey. The MOS survey is extremely sensitive to the effect of symptoms, which suggests that it might be useful as a quality-of-life indicator for AIDS clinical drug trials.
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              The care of HIV-infected adults in the United States. HIV Cost and Services Utilization Study Consortium.

              In order to elucidate the medical care of patients with human immunodeficiency virus (HIV) infection in the United States, we randomly sampled HIV-infected adults receiving medical care in the contiguous United States at a facility other than military, prison, or emergency department facility during the first two months of 1996. We interviewed 76 percent of 4042 patients selected from among the patients receiving care from 145 providers in 28 metropolitan areas and 51 providers in 25 rural areas. During the first two months of 1996, an estimated 231,400 HIV-infected adults (95 percent confidence interval, 162,800 to 300,000) received care. Fifty-nine percent had the acquired immunodeficiency syndrome according to the case definition of the Centers for Disease Control and Prevention, and 91 percent had CD4+ cell counts of less than 500 per cubic millimeter. Eleven percent were 50 years of age or older, 23 percent were women, 33 percent were black, and 49 percent were men who had had sex with men. Forty-six percent had incomes of less than $10,000 per year, 68 percent had public health insurance or no insurance, and 30 percent received care at teaching institutions. The estimated annual direct expenditures for the care of the patients seen during the first two months of 1996 were $5.1 billion; the expenditures for the estimated 335,000 HIV-infected adults seen at least as often as every six months were $6.7 billion, which is about $20,000 per patient per year. In this national survey we found that most HIV-infected adults who were receiving medical care had advanced disease. The patient population was disproportionately male, black, and poor. Many Americans with diagnosed or undiagnosed HIV infection are not receiving medical care at least as often as every six months. The total cost of medical care for HIV-infected Americans accounts for less than 1 percent of all direct personal health expenditures in the United States.
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