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HCSUS studies examine mental health, drug abuse, insurance effects, and quality of life among people with HIV

The HIV Cost and Services Utilization Study (HCSUS) surveyed a nationally representative sample of 2,864 adults infected with the human immunodeficiency virus (HIV) that causes AIDS, who were receiving HIV-related medical care in the United States in early 1996. HCSUS was conducted under a cooperative agreement between the Agency for Healthcare Research and Quality (HS08578) and RAND, with additional support from other groups and agencies.

This very large study was led by Martin F. Shapiro, M.D., and Samuel A. Bozzette, M.D., of the RAND Health Program. It was the first study to obtain a nationally representative sample of HIV patients in treatment. These patients were interviewed three times from January 1996 to January 1998. Most of the HCSUS participants had advanced HIV disease (9 out of 10 were symptomatic or had AIDS), half were minorities, and more than 40 percent were heterosexual. Almost two-thirds were not employed, and over 40 percent earned less than $10,000 a year. Six studies involving HCSUS data were recently published and are described here.

Bing, E.G., Burnam, M.A., Longshore, D., and others (2001, August). "Psychiatric disorders and drug use among human immunodeficiency virus-infected adults in the United States." Archives of General Psychiatry 58, pp. 721-728.

These researchers used standard questionnaires to screen for psychiatric and drug problems among HCSUS participants and found that nearly half of 2,864 adults receiving care for HIV in the United States in 1996 screened positive for one of four psychiatric disorders, nearly half reported using an illicit drug, and over 12 percent screened positive for drug dependence during the previous year. These treatable problems decrease quality of life, interfere with adherence to antiretroviral treatment, and increase caregiver burden and health care costs.

Over one-third screened positive for major depression and over one-fourth experienced symptoms of dysthymia (prolonged mild depression) during the previous year. Others screened positive for anxiety disorders and panic attacks. Those with private insurance were less likely than patients without insurance to suffer from psychiatric disorders. Sexual orientation was not related to any psychiatric disorder.

Heavy drinking and illicit drug use increased the likelihood of a psychiatric disorder. About half of the HCSUS population reported using an illicit drug during the past year: 12 percent reported only marijuana use, one-fourth used other illegal drugs but were not dependent, and 12 percent were dependent on at least one illicit drug. Those with more HIV-related symptoms were more likely to be drug dependent, even after accounting for other factors. Homosexuals and sexually abstinent individuals were less likely to be drug dependent than heterosexuals.

Reprints (AHRQ Publication No. 02-R009) are available from the AHRQ Publications Clearinghouse.

Turner, B.J., Fleishman, J.A., Wenger, N., and others (2001, September). "Effects of drug abuse and mental disorders on use and type of antiretroviral therapy in HIV-infected persons." Journal of General Internal Medicine 16(9), pp. 625-633.

Nearly half of HCSUS participants reported recent severe drug abuse, and 9 percent reported drug dependence. Drug problems clearly affected the likelihood that HIV-positive people would take life-prolonging antiretroviral therapy (ART), according to this study. Drug-dependent men and women and those with HIV exposure related to injection drug use were less likely to receive ART than those without these problems.

The researchers examined self-reported ART use among 2,267 HCSUS participants in 1997. About 90 percent of participants reported use of any ART, and 61 percent reported use of the more advanced, currently recommended HAART (highly active ART: three or more drugs, including at least one protease inhibitor or non-nucleoside reverse transcriptase inhibitor). After adjustment for drug abuse, mental disorders had no significant effects on use of ART, perhaps due to the high prevalence of these problems in drug users.

On a positive note, patients who had recently received mental health care were more likely than those who had not to report taking HAART, even after adjusting for other factors.

Among drug users on ART, only mental health treatment was associated with HAART. Thus, drug abuse seemed to be a greater barrier to ART use than mental disorders. Problem drinking was not associated with ART use or type of ART treatment among users. The researchers call for more studies to distinguish provider- from patient-related reasons for the failure of 10 percent of patients to receive ART.

Reprints (AHRQ Publication No. 02-R015) are available from the AHRQ Publications Clearinghouse.

Burnam, M.A., Bing, E.G., Morton, S.C., and others (2001, August). "Use of mental health and substance abuse treatment services among adults with HIV in the United States." Archives of General Psychiatry 58, pp. 729-736.

According to this study, nearly two-thirds (61 percent) of 231,400 HIV-infected adults receiving medical care for their disease in 1996 also used alcohol, drug, or mental health (ADM) services in a 6-month period. They made more than 3.5 million outpatient visits to specialty mental health or substance abuse providers. Nearly 2 percent of them were hospitalized for these problems, 3 percent received residential substance abuse treatment, 26 percent saw individual mental health specialists, 15 percent had group mental health treatment, 40 percent discussed emotional problems with their doctors, 30 percent took psychotherapeutic medications, 6 percent received outpatient substance abuse treatment, and 12 percent participated in substance abuse self-help groups.

However, these HIV-positive individuals did not have equal access to care, which varied depending on geographic and socioeconomic factors. Use of individual or family outpatient mental health visits was less likely among blacks and those with lower education or income. Higher probability of use was found among the disabled and those suffering from a greater number or severity of HIV symptoms. Individual outpatient mental health visits also were more common among people living in the Northeast and in large metropolitan areas.

Group therapy was less likely to be reported by those aged 35 to 49, the disabled, and residents of the South. Residential treatment for substance abuse was more common among blacks, the less educated, and the disabled and less common among homosexuals and residents of the Midwest and West. Use of substance abuse self-help groups was more likely, after adjusting for need, among blacks, the less educated, those residing in the Northeast or in a large metropolitan area, and those with higher CD4 cell counts. Insurance type had little impact on likely use of ADM services.

Reprints (AHRQ Publication No. 02-R010) are available from the AHRQ Publications Clearinghouse.

Chen, J.L., Phillips, K.A., Kanouse, D.E., and others (2001, July-August). "Fertility desires and intentions of HIV-positive men and women." Family Planning Perspectives 33(4), pp. 144-152, 165.

Advanced antiretroviral therapy has decreased transmission of HIV from infected mothers to their children to about 2 percent and prolonged adult survival, prompting consideration of childbearing and parenthood for HIV-positive men and women. Apparently, HIV dampens but does not come close to eliminating a person's desire and plans to have children. This HCSUS study reveals that more than one in four HIV-positive men and women receiving medical care in the United States in the late 1990s desired children in the future. Of those who wanted children, 6 in 10 men and 7 in 10 women actually expected to have children.

HIV-positive individuals who expected children were generally younger, had fewer children, and reported better physical functioning and overall health than those who did not expect children. Black men were five times more likely and black women three times more likely than others to expect children. Women who knew their partner's HIV status were more likely to expect children than women who did not (perhaps a proxy for a more tenuous or less intimate relationship). However, nearly 20 percent of HIV-positive men who desired children had a partner who did not, perhaps because of the family's dim economic prospects due to illness.

These findings suggest a looming demand for social services for children born to HIV-infected parents. Also, plans of a majority of HIV-positive men and women to have children with a primary partner or spouse whose HIV status was negative or unknown has major implications for the heterosexual transmission of HIV, caution the researchers. They recommend family planning counseling for these couples that includes the need to incorporate partner HIV testing, ways to minimize the likelihood of HIV transmission to partners and children, and how to meet the challenges of parenthood while living with HIV.

Wenger, N.S., Kanouse, D.E., Collins, R.L., and others (2001, June 13). "End-of-life discussions and preferences among persons with HIV." Journal of the American Medical Association 285(22), pp. 2880-2887.

Despite the life-prolonging benefits of modern antiretroviral treatment for HIV, the need for advanced planning for end-of-life care remains. Unfortunately, this study shows that half of all people infected with HIV are at risk of making end-of-life decisions without prior discussions with their doctor. Patients who had less denial about the severity of their illness, greater trust in their doctor, and a longer relationship with their doctor were more likely to make advanced care plans, according to the researchers. They surveyed 2,864 adults receiving HIV-related care regarding communication with a doctor about end-of-life issues and completion of advance directives.

Only half of patients discussed some aspect of end-of-life care with their doctor, and 38 percent completed an advance directive. Patients were nearly six times more likely to complete an advance directive after a discussion with their doctor. However, doctors were less likely to discuss end-of-life care with blacks and Hispanics than whites. Those infected with HIV via injection drug use and less-educated patients communicated the least with their doctors about end-of-life issues.

Women and those with children in the household communicated the most with doctors about end-of-life issues. Patients with more advanced disease, more hospitalizations in the last 6 months, more symptoms, and worse health status also were more likely to have discussed these issues. Patients who knew their doctor for more than 3 years were 1.5 times more likely to have had a discussion. Black and Latino patients had about half the odds of completing an advance directive, but disabled patients did so more often than others. Greater social support, more positive coping skills, and less denial were associated with having an advance directive.

Goldman, D.P., Bhattacharya, J., McCaffrey, D.F., and others (2001, September). "Effect of insurance on mortality in an HIV-positive population in care." Journal of the American Statistical Association 96 (455), pp. 883-893.

Eligibility for public insurance through Medicaid or Medicare usually requires HIV-positive patients to demonstrate a disability, which is almost always associated with advanced disease (and shortened life). These requirements ironically led to the erroneous conclusions of a few studies that insurance increased mortality among people with HIV infection. However, this HCSUS study demonstrates that ignoring the health status of these patients led to the false conclusion that insurance may not be protective of HIV patients. In fact, the researchers assert that policies to expand insurance coverage to the uninsured HIV-positive population could save many lives.

They correlated patient insurance status and mortality 6 months after HCSUS baseline interviews (2,864 respondents) and followup interviews (2,466 respondents), when advanced highly active antiretroviral therapy (HAART) was widely used by HIV-positive people. They identified the generosity of State-administered Medicaid programs and AIDS Drug Assistance Programs for each patient interviewed, including such factors as stringency of income eligibility and number of prescriptions paid for each month. The effect of insurance in the first model showed increased probability of death by the first followup interview or within the next 6 months.

However, when the researchers controlled for severe illness (often required for people to qualify for insurance), for example, by including health status measures like CD4 cell count, it substantially reduced the negative effect of insurance. When the researchers went further to include patient demographics, State policies, presumed HIV exposure route, years since diagnosis, and lowest ever CD4 count, insurance lowered the probability of 6-month mortality by 71 percent at baseline and 85 percent at followup.

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