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Ethnicity Does Matter When It Comes to Quality of HIV Care in United States, Survey Finds

An Interview With Sally Hodder, M.D.

October 25, 2008

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There's nothing like hearing the results of studies directly from those who actually conducted the research. In this interview, you'll meet one of these impressive HIV researchers and read her explanation of the study she presented at ICAAC/IDSA 2008.

My name is Sally Hodder. I'm a professor of medicine at New Jersey Medical School in Newark, New Jersey. I'm an author on a poster with several other infectious disease [ID] specialists from across the country, as well as Dawn Averitt Bridge of the Women's Research Initiative and Dr. Stephen Storfer of Boehringer Ingelheim. This study was supported by Boehringer Ingelheim.

Sally Hodder, M.D.
Sally Hodder, M.D.
This was an anonymous phone survey of 700 women across the country. These women had lived a long time with HIV: The mean was about 10 years. The mean time on antiretroviral medications was about eight years. So these were folks that had a lot of experience with the disease and with its treatment.1

What we found was that African-American and Hispanic women felt that their ethnicity and culture, or language, impacted the care they received, and that many HIV-infected women actually changed care because of communication issues. I think that, in some ways, this confirms the findings of the same survey [that was conducted] relevant to reproductive issues, where we found that almost half of women of childbearing age had not had a discussion with their HIV provider about whether they wanted to become pregnant and the implications for antiretroviral therapy.

In sum, this study suggests that we are missing opportunities to communicate effectively with our patients. Particularly with [members] of African-American or Hispanic groups, we need to be sure that we're communicating fully and accurately about all the aspects of this disease.

Could you go through some of the demographics?

Sure. The total [number of women surveyed] was 700. Not quite half, about 40% of those, were African American; about 30% were Hispanic; and about 30% were Caucasian. People called in [to be surveyed], but [the researchers] balanced it so they would have enough [people] in each of those groups to say something about them. [In terms of] age: 42% were 45 or older, and 19% were 35 or under. The mean age was 42. I had mentioned that they were highly antiretroviral experienced. Also, [the study population] was from across the United States; there was a geographic distribution, from the Northeast, South, Midwest and West.

Women who were surveyed were paid $25 for their time?

Right. But this was anonymous. There were fliers at a number of AIDS counseling centers. Women called the number and they participated in the survey.

For you, what was most surprising about the results?

I was not surprised that communication issues were a major reason for changing health care providers. [What did surprise me was that] women seeing a family physician or general practitioner were actually more likely than those seeing an ID specialist or other types of providers -- which, for all intents and purposes, were nurse practitioners or physician assistants -- to feel that their culture or ethnicity impacted their care. I think that may just have to do with [the fact that], if you are in a busy HIV clinic, whether you're an APN [advanced practice nurse] or an ID provider, you're seeing folks and communicating in a much more standard way than if you're a general practitioner who only sees one HIV patient a week. But that is my speculation.

Do you think there's a cultural difference in the way ID specialists treat their patients?

I'm not sure there's a cultural difference. I think it may have to do with the frequency with which they see HIV-infected individuals, and the communication patterns are probably a little bit different.

How could we change the way health care providers communicate with their patients?

I'm not sure I would know how to communicate [better], but I think that the most important thing is that we do communicate. Perhaps it's not [about] the health care provider downloading the patient, but perhaps getting more communication back. "Do you feel you understand everything you should?" "What else do you need to know?" Really opening up that channel of communication.

Was it surprising that African-American and Hispanic women so keenly noticed the difference in care they received?

I think the face of HIV in the U.S. today is women of color. Sixty-six percent of women who are identified as having HIV are black. We all come from a slightly different cultural background, so I'm not surprised that communication issues may be different for some groups than others.

Were there any differences in terms of where people live?

Women in the South were more likely than those living in the West or Northeast to feel that ethnicity and language really impacted their care. Many fewer [women from] the South said "not at all," suggesting that group really saw a difference.

Today, women of color are disproportionately affected by HIV. I think that issues of communication are paramount in this group. I think that health care providers need to take that to heart, and we need to explore what we could do to improve communication among those groups.

Are there any next steps? Are you going to do another survey like this?

[Laughs] Not that I know of. I think that this is hypothesis generating, and I think that there are a lot of studies that could go forward, or a lot of programs. This group specifically does not have further studies planned at this time.

Thank you.

This transcript has been lightly edited for clarity.


  1. Hodder S, Aberg J, Feinberg J, et al. Perceptions of care by HIV-infected women in the United States. In: Program and abstracts of the 48th Annual ICAAC/IDSA 46th Annual Meeting; October 25-28, 2008; Washington, D.C. Abstract H-443.

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This article was provided by TheBodyPRO. It is a part of the publication The 48th Annual ICAAC/IDSA 46th Annual Meeting.
See Also
ICAAC/IDSA 2008 Newsroom

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