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Researchers examine access to care, symptom prevalence, and health care services for patients with HIV infection

The HIV Cost and Services Utilization Study (HCSUS) is a national probability sample of 2,776 adults under treatment for HIV infection. Five studies supported by the Agency for Healthcare Research and Quality (HS08578) using HCSUS data were recently published and are summarized here. The first study shows that HIV-infected blacks and other vulnerable groups have less access to antiretroviral therapy than others with HIV disease. The second study concludes that the prevalence and impact on life of HIV-related symptoms are substantial but vary by care setting and patient characteristics.

The three remaining studies focus on the effects of HIV infection on patients and their families. HIV has a profound impact not only on patients who have the disease but also on their families. More than 120,000 American children with HIV-infected parents face financial, social, medical, and emotional hardships stemming from the disease, but their families have few support services to help them cope. In addition, HIV-infected parents often forego needed medical and dental care because they need to take care of their children or need the money for basic necessities such as food and rent. Thus, clinical and social support services for people affected by the HIV epidemic should have a family focus.

Andersen, R., Bozzette, S., Shapiro, M., and others (2000, June). "Access of vulnerable groups to antiretroviral therapy among persons in care for HIV disease in the United States." Health Services Research 35(2), pp. 389-416.

This study suggests that patients with HIV disease who are black or poor have less access to antiretroviral therapy than other patients. The researchers analyzed HCSUS data to correlate the impact of certain predisposing and enabling factors with receipt of highly active antiretroviral therapy (HAART) in 1996.

The most important determinant of early access to HAART was level of need, as measured by lowest CD4 count. Those with the lowest CD4 count (0-49), indicating greater severity of illness, were over five times more likely to get HAART than those with CD4 counts of 500 or greater.

Yet the adjustment for need had practically no impact on the likelihood of receiving HAART for the most vulnerable groups: female intravenous drug users (IDUs), the least educated, and minority groups. They were 41 to 65 percent less likely to have access to HAART than other HIV-positive groups, regardless of clinical need. This suggests that these patients lacked enabling resources beyond mere need, such as higher income, being tested for HIV at an anonymous test site, and ability to get a same-day appointment at the usual source of care.

After adjusting for need, female IDUs were 41 percent less likely (odds ratio, OR 0.59) to have early access to HAART than homosexual males, and patients with less than a high school education were half (OR 0.51) as likely to receive HAART as those who had completed college or graduate education. Finally, blacks were much less likely (OR 0.35) to have early access to HAART than whites. The authors conclude that substantial inequities exist regarding one's "place in line" for receiving the most efficacious drug therapies for HIV disease.

Mathews, W.C., McCutchan, A., Asch, S., and others (2000, July). "National estimates of HIV-related symptom prevalence from the HIV Cost and Services Utilization Study." Medical Care 38(7), pp. 750-762.

HIV-infected people experience a broad range of symptoms that vary depending on individual characteristics and site of care. About half of HIV-infected people surveyed as part of HCSUS experienced fever/night sweats (51 percent), diarrhea (51 percent), nausea/anorexia (50 percent), and dysesthesia or impaired sensation, (49 percent). Other prevalent symptoms included severe headache (40 percent), weight loss (37 percent), vaginal symptoms (36 percent of women), sinus symptoms (35 percent), eye trouble (32 percent), cough/dyspnea (30 percent), thrush (27 percent), rash (24 percent), oral pain (24 percent), and Kaposi's sarcoma (4 percent).

Women and injection drug users (IDUs) suffered the most symptoms, followed by people with lower levels of education, lower income, and Medicare enrollment, as well as those who received followup at teaching hospitals. Medicare beneficiaries had a high mean number of symptoms (41) compared with a low of 26 for those with private insurance. People who had an income of more than $25,000 per year had the lowest mean symptom score (30) of income groups. Symptom number scores also varied by race/ethnicity from 33 for black patients to 40 for those neither white, black, nor Hispanic in origin. IDUs were more symptomatic (41), while those reporting heterosexual contact were less symptomatic (31). Finally, patients cared for at teaching facilities were more symptomatic (38) than those being seen at non-teaching sites (34).

Symptoms were quite bothersome for most, with people rating individual symptoms in the highest two (most bothersome) of five categories in 37 to 67 percent of cases. After adjusting for CD4 count, an indicator of illness severity, the degree to which symptoms were bothersome, like symptom number, varied significantly by teaching status of the care setting, exposure/risk group, educational achievement, sex, annual income, employment, and insurance category. However, the variation was small. The clinical importance of small differences in symptom frequency and bothersomeness needs to be better understood to inform policy changes, conclude the authors.

Schuster, M.A., Kanouse, D.A., Morton, S.C., and others (2000, July). "HIV-infected parents and their children in the United States." American Journal of Public Health 90(7), pp. 1074-1081.

This study found that over one-fourth (28 percent) of adults (60 percent of women and 18 percent of men) being treated for HIV or AIDS had children younger than 18 years. Fifty-three percent of those with children had more than one child, 29 percent had two, 14 percent had three, and 10 percent had four or more. In fact, 12 percent of women conceived and gave birth to their youngest child after diagnosis. Women were more likely than men to care for their children at home (76 vs. 34 percent). Among HIV-infected parents living with children, 24 percent lived with at least one other HIV-infected adult, and 1 percent were homeless.

Many of the parents surveyed had reached a fairly advanced stage of illness, which affected their ability to care for their children. For example, 21 percent of these parents had been hospitalized in the previous 6 months, and 18 percent needed home health care. Unfortunately, these adults and their children had few financial, emotional, and social supports to help them cope with this stigmatizing and potentially fatal disease. Some parents lacked social networks that traditionally assist in caring for children, with 20 percent reporting no close friends, and 16 percent seeing family members once a month or less.

One-fourth of parents had no one to lend them money, and 16 percent had no one to help with chores. About 20 percent of the children did not live with either parent, with grandmothers most often filling the gap, followed by other relatives and unrelated adoptive or foster parents. Sixty-seven percent of HIV-infected parents were participating in one or more government program to supplement income. The authors note, however, that informal family care arrangements often do not qualify for financial assistance.

Stein, M.D., Crystal, S., Cunningham, W.E., and others (2000, July). "Delays in seeking HIV care due to competing caregiver responsibilities." American Journal of Public Health 90(7), pp. 1138-1140.

Women with AIDS (and less often men) may have children, HIV-infected relatives, or partners who require care. They often delay medical care for themselves because they are caring for others, according to this study. Answers to a HCSUS survey question on the topic revealed that 14 percent of women and 6 percent of men with HIV disease had delayed seeking care for themselves in the previous 6 months as a result of caring for someone else. Women with HIV disease were nearly twice (odds ratio, OR 1.6) as likely as men to put off needed care, and HIV-infected people with a child in the household were nearly twice as likely (OR 1.8) to put off care as those without children.

In addition, nearly equal proportions of men and women lived with another HIV-positive person, and they were 1.8 times more likely to put off needed care than those who did not live with an infected partner. These findings confirm that people living with AIDS often act as family caregivers, and that this role often leads them to delay seeking their own care. The authors emphasize the need for supportive services for HIV-infected women, such as free on-site child care in medical facilities where they receive care. It must be noted, however, that women who are using drugs may avoid child care assistance for fear of losing custody of their children.

Marcus, M., Freed, J.R., Coulter, I.D., and others (2000, July). "Perceived unmet need for oral treatment among a national population of HIV-positive medical patients: Social and clinical correlates." American Journal of Public Health 90(7), pp. 1059-1063.

Nearly one of every five HIV-infected people who were interviewed as part of the HCSUS study said they needed dental care that they did not receive (unmet need) in the last 6 months. This perceived unmet need was related more to social and economic factors than to stage of infection (CD4 cell count). For instance, the odds of not getting needed dental care were doubly high for those on Medicaid in States without dental benefits (odds ratio, OR 2.2) as in States with such benefits. Patients with incomes under $10,000 also had twice the risk of unmet need (OR 2.2) compared with those who had incomes over $25,000. The same was true for those with less than a high school education (OR 1.8) compared with those who had a bachelor's degree or higher. Finally, blacks were more likely to have an unmet need for dental care than whites (24 vs. 16 percent).

Dental insurance mattered. Those with no dental insurance and not covered by Medicaid were almost three times as likely to have a perceived unmet need as those with private insurance. Those covered by Medicaid but living in States without adult dental benefits were four times more likely to have unmet dental need than those with private insurance. Yet in States where the Medicaid programs included dental benefits, there was no significant difference between Medicaid-insured people and those with private dental insurance.

The authors conclude that an expansion of Medicaid dental benefits may reduce unmet need for dental care among HIV-infected people. It also may improve their quality of life and have an impact on the course of the disease, since for some, unmet need for dental care was associated with either pain or infection. These findings are based on answers to questions about dental need in the HCSUS survey.

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