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© 2002 American Public Health Association
RESEARCH AND PRACTICE |
The authors are with the Department of Pediatrics, Pediatric AIDS Center, Stony Brook University, Stony Brook, NY.
Correspondence: Requests for reprints should be sent to Katelin Thomas, MPH, CHES, Suffolk Project for AIDS Resource Coordination, 30 W Main St, Suite 102, Riverhead, NY 11901 (e-mail: kathomas{at}notes.cc.sunysb.edu).
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INTRODUCTION |
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 TOP INTRODUCTION References |
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Studies of cardiovascular disease,1–6 prenatal care,7 and mammography8 have revealed racial or gender disparities, or both, in levels of medical care received. We conducted focus groups in Suffolk County, New York, for HIV-infected women and adolescents to ascertain whether women and adolescents (particularly African Americans and Hispanics) were receiving quality medical care. As one measure of quality care, we chose to look at the treatments that patients were offered.
Forty women and youths participated in the groups, which were conducted in 2000. Of these individuals, 25 (63%) were HIV positive, and 29 (73%) identified themselves as African American, Hispanic, or Native American. Of the 25 HIV-infected individuals, 20 were adult women and 5 were adolescents. Nineteen participants (48%) were parents or guardians of HIV-positive children. Most of the participants reported having a good relationship with their medical provider and being very satisfied with their care.
Of the 20 HIV-positive women participating in the groups, 11 were not currently taking antiretroviral medication. One was newly diagnosed and had not yet been offered medication. Three had been offered medication but had thus far declined treatment. Seven women had taken combination medications in the past but had discontinued them. Of the 9 women who were taking combination medications, 1 had stopped therapy for several months but had recently resumed treatment when she learned that her viral load had increased dramatically and her CD4 cell count had dropped.
A majority of the women who had been prescribed antiretroviral medications reported that their medical providers had discussed possible side effects with them, although strategies to minimize these side effects were not always discussed. Of the 4 HIV-positive women who were also parents of HIVpositive children, 3 were taking combination medications and 1 was not. All of the HIV-positive children and 4 of the 5 HIV-positive adolescents were taking combination medications. The adolescent who was not taking medication had been offered combination therapy but thus far had declined treatment.
Reasons for not taking antiretroviral medications varied. The reason most commonly mentioned by the participants was feeling that their bodies needed a break from the drugs. Other reasons reported by participants were not liking the way the medications made them look or feel and wanting to try a more holistic approach. Two women reported that they had not taken their initial treatment break intentionally but that, once the break occurred, they chose not to resume their medications. All of the participants who were not currently taking medications reported that their medical providers were aware of the situation.
A larger scale survey should be conducted to determine whether the percentage of HIV-positive women participating in these focus groups who have discontinued therapy is representative of the HIV-positive population in general. However, on the basis of the present findings, it is clear that more information needs to be made available to HIV-positive individuals about how to effectively manage side effects associated with antiretroviral therapies. As a medical community, we must learn strategies to work with patients in regard to resuming treatment once a treatment break has occurred.
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Acknowledgments |
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This study was supported by Ryan White Title IV grant 5H12HA00060-07 from the HIV/AIDS Bureau of the Health Resources and Services Administration, US Department of Health and Human Services, through the Research Foundation of Stony Brook University.
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Footnotes |
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K. Thomas, A. T. O'Connor, and S. A. Nachman contributed to the conception of the study and the writing and review of this brief. K. Thomas had primary responsibility for designing and conducting the focus groups and for data analysis and report preparation. L. Rubino had primary responsibility for data collection and contributed to report preparation and approval.
Accepted for publication October 4, 2001.
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References |
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Burns RB, McCarthy EP, Freund KM, et al. Black women receive less mammography even with similar use of primary care. Ann Intern Med. 1996;125:173–182.
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