BUSINESS WIRE; Monday, January 26, 1998

The CAPS study was conducted to examine the barriers and motivators to use of combination therapies in patients with HIV disease.

"Having drugs available is one thing, but a bigger challenge is getting people to take them and take them appropriately," said Tom Coates, PhD, UCSF professor of medicine and epidemiology, executive director of the UCSF AIDS Research Institute, director of CAPS and principal investigator of the study. "Our results identified three major needs: quality time for patients with physicians, more information about available therapies and special outreach to women and minorities."

He said that people are thoughtful about whether or not to take these drugs, and they need to have the time with their physicians to go through the decision-making process.

Multi-drug combinations of anti-HIV therapies have proven quite effective in clinical trials and are helping many people stay alive longer and have a better quality of life while they are alive. CAPS researchers sought to find out why people do or do not take advantage of these therapeutic advances.

The study involved in-depth, qualitative interviews with 114 individuals in the HIV community, including 75 HIV-positive men and women. More than half, or 53 percent of the patients interviewed, were not on combination therapy.

Patients who were not on therapy most often indicated that they would be motivated to start the treatment if they experienced a decline in their health status, if they saw or heard about improvements in other patients, if they obtained better research information about the drugs, and/or if they came to believe that the therapy would prolong their lives. Some patients also said that a positive recommendation from their physician would be key to starting therapy or if they learned how to cope with the treatment regimens and drug side effects.

The researchers found that these patients were most often deterred from starting treatment because they were concerned about short- and long-term side-effects, were concerned or skeptical about drug effectiveness, and believed their health was good -- based on T-cell counts, viral loads or lack of opportunistic infections.

Patients also said they were deterred from taking advantage of combination therapies for a number of reasons, including: concern about the complex and demanding treatment regimen, a belief that the drugs were "too experimental," concern about taking medications in general, a belief they could manage the disease on their own, a concern about developing drug resistance, a preference for holistic and alternative remedies, and/or because their medical providers had not recommended that they begin treatment, the researchers found.

"People are hungry for information about these drugs, not only how they work but how to take them to maximize effectiveness and minimize the side-effects," Coates said. "And, therefore, since people have limited time with physicians, they are relying on other resources. So there is a great need to support the community and information services to make sure patients have access to accurate information. The study also indicates a crying need for special information about how the drugs affect women and for special outreach to minorities, especially Spanish-speaking people."

The results of the study are published in a CAPS monograph entitled, "Motivators and Barriers to Use of Combination Therapies in Patients with HIV Disease." The study was sponsored by Glaxo Wellcome.

In addition to the 75 patients, the study included interviews with 18 regional hotline operators and supervisors, 11 case managers and 10 physicians and nurse practitioners who specialize in HIV care. The patients were interviewed in a dozen cities across the country during October, November and December 1997 and represented a wide range of ethnic and racial groups. Thirty-nine percent of the patients identified themselves as heterosexual, 49 percent as gay, 9 percent as bisexual and 3 percent as lesbian. The patient interviews were conducted one-on-one in person and by telephone, with interviews ranging from 30 minutes to more than an hour.

In general, patients said they relied on their physicians in deciding whether or not to start combination therapy and considered them a credible source of information. Indeed, most patients said it was their physicians who first recommended this form of treatment. In addition, patients said they looked to other information sources, including specialized publications, HIV web sites, support groups and other HIV-positive individuals, in making the decision. Women who were interviewed in the study noted a lack of resources that related specifically to them.

Women, who are a growing segment of the HIV population, said they were often reluctant to start therapy because they believed there was too little research on the impact of the drugs on women and childbearing. Women also were more apt to rely on support groups than men, yet they found it difficult to locate groups geared specifically for them. Based on these findings, the investigators recommended the following:

-- Clinicians need multiple forums in which they can share information with other clinicians and discuss possible approaches to treatment.

-- Clinicians and patients need time to discuss whether or not to start antiretrovirals.

-- The information needs of people extend beyond how the drugs work to how to cope with the drug regimens and their side-effects.

-- Other resources used by patients to gain information must be as accurate, comprehensive and current as possible.

-- Women need special services to assist them in deciding about antiretroviral therapy.

-- Spanish-speaking patients are not being well-served by the public health system and need more Spanish-speaking clinicians and interpreters in order to benefit from antiretroviral therapy.

-- Patients and clinicians need access to the best information possible on alternative and holistic remedies to treat HIV.

-- Pharmaceutical companies need to be encouraged to continue drug development so that antiretrovirals can become even more effective and easier to take with fewer side-effects.

In addition to Coates, the study authors are Maureen Michaels, president, and Bruce Carlson, research associate, both of Michaels Opinion Research.

CONTACT: University of California, San Francisco Alice Trinkl, 415/476-3804

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