Community-Based HIV Clinical Trials: An Integrated Approach in Underserved, Rural, Minority Communities

Corbie-Smith, Giselle; Isler, Malika Roman; Miles, Margaret Shandor; Banks, Bahby

doi:10.1353/cpr.2012.0026

Cited by 5 publications

(10 citation statements)

References 26 publications

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“…However, these findings are consistent with other studies showing lower participation in clinical trials by racial and ethnic minority groups. [21][22][23][24][25][26][27][28][29][30][31][32] Tumor biopsies and molecular testing are necessary to select patients who will benefit from specific molecularly targeted therapies. Such testing is also required for Figure 1.…”

Section: Discussionmentioning

confidence: 99%

Attitudes toward molecular testing for personalized cancer therapy

Yusuf

Rogith

Hovick

et al. 2014

Cancer

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Background We assessed attitudes of breast cancer patients regarding molecular testing for personalized therapy and research. Methods A questionnaire was given to female breast cancer patients presenting to a cancer center. Associations between demographic, clinical variables and attitudes towards molecular testing were evaluated. Results 308 patients were approached and 100 completed the questionnaire (32% response rate). Most participants were willing to undergo molecular testing to assist in selection of approved drugs (81%) and experimental therapy (59%) if testing was covered by insurance. Most participants were white (71%). Even if testing was financially covered, non-white participants were less willing to undergo molecular testing for selection of approved drugs (nonwhites vs. whites, 54% vs. 90%, OR=0.13; p=0.0004) or experimental drugs (35% vs. 68%, OR=0.26; p=0.0072). Most participants (75%) were willing to undergo a biopsy to guide therapy, and 46% were willing to undergo research biopsies. Non-white participants were less willing to undergo research biopsies (17% vs. 55%, OR=0.17; p=0.0033). Most participants wanted to be informed when research results had implications for treatment (91%), new cancer risk (90%), and other preventable/treatable diseases (87%). Conclusions Most patients are willing to undergo molecular testing and minimally invasive procedures to guide approved or experimental therapy. There are significant differences in attitudes towards molecular testing between racial groups; non-whites are less willing to undergo testing even if the results would guide their own therapy. Novel approaches are needed to prevent disparities in delivery of genomically informed care and to increase minority participation in biomarker-driven trials.

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Section: Discussionmentioning

confidence: 99%

Attitudes toward molecular testing for personalized cancer therapy

Yusuf

Rogith

Hovick

et al. 2014

Cancer

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“…In two related articles, we describe the perspective of residents about the communities we were studying based on analysis of the focus group and interview data and a mapping and photoessay exercise with our CAB (Corbie-Smith, Banks et al, 2010; Corbie-Smith, Isler et al, 2010). Of importance to this article were themes related to geographic isolation of small towns; high unemployment and low educational levels resulting in poverty; limited recreational, health, and educational resources; traditional values and religious beliefs; and historical and curren t racism (Corbie-Smith, Banks et al, 2010).…”

Section: Resultsmentioning

confidence: 99%

“…As such, we explored how factors at the societal, community, and personal levels affected responses to HIV and people with HIV (Corbie-Smith, Isler, et al, 2010; Flaskerud & Winslow, 1998; Gelberg et al, 2000). This perspective strengthens the importance of working with local rural communities toward a better understanding of HIV as a chronic, treatable disease and improving negative attitudes and behaviors toward PLWH.…”

Section: Discussionmentioning

confidence: 99%

“…This perspective strengthens the importance of working with local rural communities toward a better understanding of HIV as a chronic, treatable disease and improving negative attitudes and behaviors toward PLWH. Such interventions can only be done through collaborative partnerships that involve community leaders, health providers, and PLWH (Corbie-Smith, Isler et al, 2010). …”

Section: Discussionmentioning

confidence: 99%

“…Data for this qualitative descriptive inquiry were from a larger study, Project Education and Access to Services and Testing (EAST), in which a community-based participatory research approach was used to explore community, provider, and PLWH perspectives about HIV, research, and HIV clinical trial participation for minorities living in rural areas (Corbie-Smith, Isler, Miles, & Banks, 2010; Corbie-Smith et al, 2010). We listened to the voices of community leaders and service providers through focus groups ( n = 11) and the voices of African Americans with HIV ( n = 30) through individual interviews.…”

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Silent Endurance and Profound Loneliness: Socioemotional Suffering in African Americans Living With HIV in the Rural South

et al. 2010

Self Cite

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We explored how community responses to HIV contribute to distress in African Americans living with HIV in the rural South of the United States. We listened to the voices of community members through focus groups and African Americans with HIV through interviews. Community avoidance of HIV, negative views of HIV, and discriminatory behavior powerfully affected the distress of people living with HIV (PLWH). Ongoing distress, coupled with limited support, led to a life in which many PLWH endured their pain in silence and experienced profound loneliness. We conceptualized their experiences as socioemotional suffering-the hidden emotional burden and inner distress of not only living with HIV, a complex serious illness, but also with the societal attitudes and behaviors that are imposed on the illness and on PLWH. To improve the quality of life and health of PLWH, we cannot focus solely on the individual, but must also focus on the local community and society as a whole.

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Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

Day

Blumberg

et al. 2018

J Intern AIDS Soc

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IntroductionStakeholder engagement is an essential component of HIV clinical trials. We define stakeholder engagement as an input by individuals or groups with an interest in HIV clinical trials to inform the design or conduct of said trials. Despite its value, stakeholder engagement to inform HIV clinical trials has not been rigorously examined. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines.MethodsWe used the PRISMA checklist and identified English language studies describing stakeholder engagement to inform HIV clinical trials. Four databases (PubMed, Ovid, CINAHL and Web of Science) and six journals were searched, with additional studies identified using handsearching and expert input. Two independent reviewers examined citations, abstracts and full texts. Data were extracted on country, engagement methods, stakeholder types and purpose of stakeholder engagement. Based on the GPP guidelines, we examined how frequently stakeholder engagement was conducted to inform clinical trial research question development, protocol development, recruitment, enrolment, follow‐up, results and dissemination.Results and discussionOf the 917 citations identified, 108 studies were included in the analysis. Forty‐eight studies (44.4%) described stakeholder engagement in high‐income countries, thirty (27.8%) in middle‐income countries and nine (8.3%) in low‐income countries. Fourteen methods for stakeholder engagement were identified, including individual (e.g. interviews) and group (e.g. community advisory boards) strategies. Thirty‐five types of stakeholders were engaged, with approximately half of the studies (60; 55.6%) engaging HIV‐affected community stakeholders (e.g. people living with HIV, at‐risk or related populations of interest). We observed greater frequency of stakeholder engagement to inform protocol development (49 studies; 45.4%) and trial recruitment (47 studies; 43.5%). Fewer studies described stakeholder engagement to inform post‐trial processes related to trial results (3; 2.8%) and dissemination (11; 10.2%).ConclusionsOur findings identify important directions for future stakeholder engagement research and suggestions for policy. Most notably, we found that stakeholder engagement was more frequently conducted to inform early stages of HIV clinical trials compared to later stages. In order to meet recommendations established in the GPP guidelines, greater stakeholder engagement across all clinical trial stages is needed.

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Community-Based HIV Clinical Trials: An Integrated Approach in Underserved, Rural, Minority Communities

Cited by 5 publications

References 26 publications

Attitudes toward molecular testing for personalized cancer therapy

Attitudes toward molecular testing for personalized cancer therapy

Silent Endurance and Profound Loneliness: Socioemotional Suffering in African Americans Living With HIV in the Rural South

Stakeholder engagement to informHIVclinical trials: a systematic review of the evidence

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