HIV-Infected African Americans are Willing to Participate in HIV Treatment Trials

Section of Palliative Care and Medical Ethics, Division of General Internal Medicine, University of Pittsburgh Medical Center, Pittsburgh, PA 15213, USA.
Journal of General Internal Medicine (Impact Factor: 3.42). 02/2007; 22(1):17-42. DOI: 10.1007/s11606-007-0121-8
Source: PubMed


Despite the high prevalence rates of HIV infection in the African-American community, African Americans remain underrepresented in HIV treatment trials.
(1) To develop a questionnaire that measures attitudes and concerns about HIV treatment trials among HIV-infected African Americans at a university-based clinic. (2) To determine actual participation rates and willingness to participate in future HIV treatment trials among HIV-infected African Americans at a university-based clinic.
Questionnaire development and cross-sectional survey. SETTING, PARTICIPANTS, AND MEASUREMENTS: In a sample of 200 HIV-infected African-American adults receiving medical care at the Pittsburgh AIDS Center for Treatment (a university-based ambulatory clinic), we assessed research participation rates and willingness to participate in future HIV treatment trials, trust in the medical profession, sociodemographic characteristics, attitudes, and concerns about HIV treatment trials.
Research participation rates and willingness to participate in future HIV treatment trials.
Only 57% of survey respondents had ever been asked to participate in an HIV treatment trial but 86% of those asked said yes. Prior research participation was significantly related to willingness to participate in future HIV treatment trials (P = .001). Contrary to previous studies, neither trust/distrust in the medical profession nor beliefs about the dishonesty of researchers was associated with research participation rates or willingness to participate in future HIV treatment trials.
Having never been asked to participate in research is a major barrier to the participation of HIV-infected African Americans in HIV treatment trials. African Americans who seek medical care for HIV infection should be asked to participate in HIV treatment trials.

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    • "While race/ethnicity may be associated with willingness to participate in medical research [2] [12] [18] [19] other factors may modify attitudes and behaviors regarding participation in medical research. For instance, it has been documented that patient access to medical care is a predictor of patients' trust in physicians [15] [16] [18]. Conversely, lack of continuity of care has been proposed to have a greater impact on trust than race, gender, education or income [20] [21]. "
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    ABSTRACT: Although it is federally-mandated that racial/ethnic minorities be included in research studies, recruiting diverse populations remains a challenge. This is particularly difficult when research involves children. The purpose of this study was to assess attitudes and beliefs toward medical research among a racially and socioeconomically diverse population of parents of school children. A cross-sectional parent-report survey was conducted in New York City public elementary schools using stratified random selection to obtain a diverse population. Fear of medical research and likelihood to participate in medical research were assessed using a validated questionnaire. Differences in fear/likelihood to participate in research across race/ethnicity and socioeconomic characteristics were evaluated. In general, parents were afraid of their child "being treated as a guinea pig", but were willing to allow their child to participate in research if asked by their own doctor. Factors associated with a lower score on fear toward research were; primary language other than English (OR=0.59), access to an interpreter (OR=0.73) and access to medical service within a day (OR=0.51). Latinos had the highest fear score (OR=1.87) compared to Whites. Asians were the ethnic group most likely to participate in research (OR=1.71). Low education level (OR=2.18) and public health insurance (OR=1.37) were associated with a higher score for likelihood of allowing one's child to participate in medical research. Minority parents reported more fear of allowing their children to participate in medical research, but were as likely to consent their children's participation, especially if asked by their own physician.
    Contemporary clinical trials 08/2012; 33(6):1197-205. DOI:10.1016/j.cct.2012.07.014 · 1.94 Impact Factor
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    • "Additionally, Sub-Saharan Africa still represents the largest population of individuals with HIV/AIDS, and the majority of new cases reported worldwide are in this area.6 Unfortunately, however, the majority of clinical research is performed in countries like the United States where individuals of African descent are minorities, and this population is generally underrepresented in research.7 "
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    ABSTRACT: One of the great advances in the treatment of HIV-1 infection was the development of the highly active antiretroviral therapy (HAART). Although this treatment strategy is highly effective in many individuals, interpatient variability of drug response and high incidences of short- and long-term toxicities remain significant problems associated with this treatment. Logically, pharmacogenetic differences among HIV-1-infected individuals are thought to represent important factors contributing to antiretroviral drug response. Studies have identified polymorphisms in drug-metabolizing enzymes, drug transporters, and most recently the human leukocyte antigen locus that appears to have significant effects on the clinical outcomes of antiretroviral therapy. Furthermore, some studies have shown that many of these crucial polymorphisms are more likely or less likely in certain populations. This review investigates the potential role of pharmacogenomics in the management of HIV-1 infection in people of African descent.
    Pharmacogenomics and Personalized Medicine 09/2009; 2(1):93-9. DOI:10.2147/PGPM.S5824
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    ABSTRACT: It was carried out a descriptive, retrospective and longitudinal study of the medical records of 245 people who have been diagnosed as having HIV-aids and who have been treated at the municipal decentralization office of Centro Havana from January 2006 through June 2008. The study was aimed at making a characterization of the office. The statistical analysis consisted on the calculation of the absolute and relative frequencies of each of the variables under study, using the SPSS statistical package, version 11.5. The study revealed that the highest percentage of patients was between 20 to 39 years old, in both sexes, with a prevalence of people who have completed either secondary or pre-university education. 60 % are retired, 60. 4% live crammed and the majority of them live on houses in regular or bad conditions. 72,6% of the studied group has a homosexual orientation. Based on the HIV and aids classification, 149 were diagnosed as having HIV. The studied group of highest incidence was the one selected. 99% became infected via sexual transmission. The more frequent unhealthy habit was a sedentary lifestyle. The most frequently reported side effect of the three-therapy treatment was the hyperlipidemia. The most prevalent opportunist infectious disease was Pneumonia by Pneumocistis Carini. Depressive neurosis was the main diagnosis at the medical office, while the most prevalent non-transmissible chronic disease was hypertension. Fourteen patients have died; 1873 consultations and 674 home visits have been made. We recommend that a medical multidisciplinary team be put together at the HIV-AIDS office, and that a plan of action will be created to solve the detected problems.
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