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Limited access to care affects quality of life more than some physical symptoms for poor HIV-infected persons

Low-income persons infected with the human immunodeficiency virus (HIV) who experience HIV-related symptoms such as fever, diarrhea, or rapid weight loss have an urgent need for care. Yet, they have a much more difficult time obtaining medical care than others, and the struggle to obtain needed care may diminish their quality of life more than their disease does, according to a recent study that was supported in part by the Agency for Health Care Policy and Research (HS06775).

William E. Cunningham, M.D., M.P.H., of the University of California, Los Angeles, and his colleagues compared the access to care of 205 low-income adults infected with HIV at one public and one Department of Veterans Affairs (VA) hospital with their health-related quality of life (HRQOL). Over half of the patients were Latino (28 percent) or black (26 percent). Findings showed that worse overall access to care was strongly associated with poorer HRQOL, even after controlling for CD4 count and symptoms. HRQOL refers to current health perceptions, energy/fatigue, freedom from pain, emotional well-being, ability to carry out social functions, hopefulness, lack of loneliness, and so forth. The overall quality-of-life score was 59.7 for those who perceived high access to care compared with 44.5 for those who perceived low access, a significantly larger effect than having a fever in the preceding 2 weeks.

Problems with access to care for this group were widespread, especially among the uninsured: 55 percent traveled for over 30 minutes to a usual source of care (compared with 9-12 percent of the general population in national surveys); 49 percent had difficulty paying for their care; and 38 percent had trouble obtaining urgent care or emergency care (33 percent). These findings add to previous ones showing that traditionally disadvantaged groups, such as the poor, often face barriers to therapy that could potentially reduce their symptoms and disease progression.

See "Access to medical care and health-related quality of life for low-income persons with symptomatic human immunodeficiency virus," by Dr. Cunningham, Ron D. Hays, Ph.D., Kevin W. Williams, M.D., M.P.H., and others, which appears in Medical Care 33(7), pp. 739-754, 1995.

Satisfaction with outpatient AIDS care differs among patient groups

Blacks and injection drug users (IDUs) with acquired immunodeficiency syndrome (AIDS) are twice as likely to rate the quality of their outpatient care lower than other AIDS patients, regardless of where they receive their care or the severity of their illness. Women and Medicaid patients who have AIDS also are apt to rate their quality of outpatient care lower. This suggests that models of care which have proven useful for homosexual white men, who were hit hardest by the initial wave of the AIDS epidemic, need to be reassessed for their effectiveness and relevance to minorities, IDUs, and women who are increasingly being affected by AIDS, according to a study supported by the Agency for Health Care Policy and Research (HS06239).

Researchers at Boston University, Harvard Medical School, and Brigham and Women's Hospital used patient surveys and medical records of 305 patients at a public hospital AIDS clinic, an academic group practice, and a staff-model health maintenance organization (HMO) during 1990 and 1991 to examine the relationship between patient characteristics and site of care to patients' perceptions of outpatient care. They used a six-item scale of patient-rated quality of care (PRQC) that combined patients' ratings of the care received from physicians, nursing care, involvement in medical decisions, and overall quality of care.

The researchers found that black patients and IDUs were twice as likely as other AIDS patients to rate their care in the lowest quartile. This suggests that their care needs are not being met as well as the needs of other patients. Nearly all of the patients (97 percent) could identify a regular physician, but only 55 percent could identify a regular nurse. Those who had a regular nurse were half as likely to have low PRQC scores, validating the important role of primary nursing in outpatient AIDS care.

See "Satisfaction with ambulatory care of persons with AIDS: Predictors of patient ratings of quality," by Valerie E. Stone, M.D., M.P.H., Joel S. Weissman, Ph.D., and Paul D. Cleary, Ph.D., in the Journal of General Internal Medicine 10, pp. 239-245, 1995.

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