“Where Did This [PrEP] Come From?” African American Mother/Daughter Perceptions Related to Adolescent Preexposure Prophylaxis (PrEP) Utilization and Clinical Trial Participation

2018 ◽  
Vol 13 (2) ◽  
pp. 173-184 ◽  
Author(s):  
Faith E. Fletcher ◽  
Celia Fisher ◽  
Meredith K. Buchberg ◽  
Brenikki Floyd ◽  
Anna Hotton ◽  
...  

Despite the demonstrated effectiveness of preexposure prophylaxis (PrEP) to reduce incident HIV infections, PrEP’s potential as an HIV prevention strategy for adolescent populations is unknown. This study assessed perceptions of adolescent PrEP use and clinical trial participation among African American women and their adolescent daughters. We conducted focus group discussions with 15 African American mother/daughter pairs ( N = 30). Findings suggest a general lack of PrEP awareness, favorable attitudes toward adolescent PrEP use, altruistic attitudes regarding research participation among daughters, and less favorable attitudes toward adolescent clinical trial participation among mothers. Study findings have the potential to inform strategies that provide equitable access to HIV scientific advances among African American women and girls and promote informed parent–child research decision making.

2005 ◽  
Vol 23 (34) ◽  
pp. 8730-8738 ◽  
Author(s):  
Jeanette M. Trauth ◽  
Jan C. Jernigan ◽  
Laura A. Siminoff ◽  
Donald Musa ◽  
Derietra Neal-Ferguson ◽  
...  

Purpose The purpose of this study is to describe the factors associated with the decisions of older African American women to join the PLCO (Prostate, Lung, Colorectal and Ovarian) Cancer Screening Trial when recruited. Methods African American women between ages 55 and 74 years who were never diagnosed with a PLCO cancer were eligible for our study. Two methods of recruitment were used. First, mailings were sent to a random sample of women describing the PLCO followed by a telephone call to determine interest in the PLCO. If women were not interested in PLCO but consented to participate in our study, they were interviewed immediately. Second, we followed up with African American women who responded to mass mailings sent out before the start of our study by the Pittsburgh PLCO office. Women completed an interview about their cancer and clinical trial knowledge, attitudes, beliefs, and behaviors. The responses of women who joined the PLCO Trial are contrasted with the responses of women who did not join. Results Numerous factors were associated with the decision of older African American women to join the PLCO, including perceptions of cancer prevention and detection, the experience of having a loved one with cancer, knowledge of and experience with clinical trials, and beliefs regarding the benefits and risks of clinical trial participation. Conclusion Minority recruitment to cancer clinical trials could be increased by designing interventions focused on individual, organizational, and community needs.


2018 ◽  
Vol 13 (5) ◽  
pp. 511-524 ◽  
Author(s):  
Nicole M. Overstreet ◽  
Mukadder Okuyan ◽  
Celia B. Fisher

African American women living with HIV were asked to reflect on the perceived risks and benefits of research participation after completing a study examining socially sensitive issues in their lives, including intimate partner violence (IPV) and HIV. Administration of standardized quantitative instruments yielded positive responses to the research experience. However, qualitative assessments of perceived risks and benefits revealed more nuanced responses. For example, confidentiality concerns were more prominent in open-ended responses as was participants’ positive attitudes toward monetary compensation. In addition, some women reported that study participation provided them with new insights about their experiences with IPV. Findings suggest that empirical studies on research protections involving potentially distressing and socially sensitive experiences with vulnerable populations require both quantitative and qualitative assessments of perceived risks and benefits. We discuss implications of our findings for ethics practices in trauma-related research among populations with multiple social vulnerabilities.


2020 ◽  
Vol 7 (1) ◽  
pp. e000360
Author(s):  
Cristina Arriens ◽  
Teresa Aberle ◽  
Fredonna Carthen ◽  
Stan Kamp ◽  
Aikaterini Thanou ◽  
...  

ObjectiveAlthough SLE disproportionately affects minority racial groups, they are significantly under-represented in clinical trials in the USA. This may lead to misleading conclusions in race-based subgroup analyses. We conducted focus groups to evaluate the perceptions of diverse patients with lupus about clinical trial participation.MethodsA qualitative research design employed three 90 min focus groups led by a trained moderator and guided by the Theory of Planned Behaviour. Open-ended questions about trial participation included advantages and disadvantages (behavioural beliefs), approving and disapproving significant others (normative beliefs), and participation enhancers and barriers (control beliefs). Discussions were recorded, transcribed and analysed to identify emerging themes.ResultsPatients with SLE (n=23) aged 21–72, with increased proportion of minority groups (65%), participated. Reported advantages of trial participation included altruism and personal benefit. Disadvantages included uncertainties, disappointment, information burden, and life–health balance. Although some patients had discussed research participation with approving or disapproving family or friends, self-approval superseded external approval. Barriers included logistics and time, and facilitators included flexibility in scheduling, advance notice of studies, streamlined forms, and hope for SLE improvement.ConclusionsKnowledge about potential benefits of clinical trial participation was high. Minority patients demonstrated confidence in making their own informed decisions, but major barriers for all participants included burdensome forms, travel, childcare, and work. These suggest a major impact on minority and all recruitment from behavioural and control aspects, which should be considered in the logistics of trial design. This does not minimise the potential importance of improved access and education about clinical research.


2014 ◽  
Vol 1 (4) ◽  
pp. 337-342 ◽  
Author(s):  
Marino A. Bruce ◽  
Bettina M. Beech ◽  
Gina E. Hamilton ◽  
Shirley M. Collins ◽  
Katrena D. Harris ◽  
...  

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4965-4965
Author(s):  
Gygeria Manuel ◽  
Amy Ayers ◽  
Jonathan Berman ◽  
Shannon Blee ◽  
Claire Sibold ◽  
...  

Abstract Background: Although the incidence of non-Hodgkin lymphoma (NHL) is lower in minority populations, there is a difference in presentation, survivorship and participation in clinical trials (Becnel et al., 2017). African American patients with diffuse large B-cell lymphoma (DLBCL) present with more aggressive features including higher lactate dehydrogenase, increased frequency of B-symptoms, and higher rate of HIV co-infection, while also presenting at a younger age than other patients. (Tiu et al., 2020). Given the association of race with lymphoma presentation and outcomes, minority participation in clinical trials is of vital importance when developing novel therapies. There have been efforts to increase participation of African Americans in cancer clinical trials including patient navigation outreach which resulted in improvement of 9% to 16% of patients approached (Fouad et al., 2016). However, a recent study illustrated that for DLBCL, acute myeloid leukemia, and acute lymphoblastic leukemia, individuals of African descent represented 1.5%, 2.3%, and 6.7% of clinical trial participants, respectively (Gopishetty et al., 2020). We are conducting the current study to identify factors that influence decisions regarding clinical trial participation in African American patients with NHL. Methods: We are identifying African American patients with diffuse large B cell lymphoma and follicular lymphoma who enrolled in a therapeutic clinical trial at Emory University between 2010-2020. We will utilize the electronic medical record to identify patient characteristics such as distance from medical facility, insurance status, type of insurance, comorbidities, education status, type of diagnosis, and race of diagnosing physician. This data will compare African American patients who participated in clinical trials to those who did not participate as part of their initial treatment, specifically comparing baseline characteristics of interest between the groups. Furthermore, the data mention above will be compared between African American and white patients. We are also conducting interviews with a selected group of African American patients that have opted to participate in therapeutic clinical trials to gain a thorough understanding of the barriers and benefits they endured during their experience. The interview questions are based on prior knowledge of clinical trials, distance to facility, religious/ spiritual belief, trust of the physician, additional expenses, and time corresponded to treatment. Patients are asked to rate the importance each factor in their decision to participate and elaborate on points most specific to them. In addition, the interview allows for discussion of possible factors that challenged their participation in clinical trials which may allow for insight on low participation levels nationally. Furthermore, we are going to target patients who enrolled on clinical trials and will subsequently identify patients who did not participate in studies to identify differences in perception of treatment and clinical investigation. This project is partnered with Accounting for the High Enrollment of African Americans in Winship Cancer Institute's Clinical Trials, at Emory University. Conclusions:This study is currently enrolling patients and will answer key questions related to clinical trial participation in African American patients with lymphoma. We aim for the data collected from this study to assist in creating lymphoma clinical trials that better cater to the unique needs and considerations of African Americans. Disclosures Cohen: Genentech, Takeda, BMS/Celgene, BioInvent, LAM, Astra Zeneca, Novartis, Loxo/Lilly: Research Funding; Janssen, Adaptive, Aptitude Health, BeiGene, Cellectar, Adicet, Loxo/Lilly, AStra ZenecaKite/Gilead: Consultancy.


2020 ◽  
Vol 38 (29_suppl) ◽  
pp. 96-96
Author(s):  
Brian Shinder ◽  
Sinae Kim ◽  
Hiren V. Patel ◽  
Arnav Srivastava ◽  
Tina M. Mayer ◽  
...  

96 Background: Clinical trials are critical for the development of new treatment paradigms for Prostate Cancer (PCa). The primary aim of this study was to characterize the factors associated with clinical trial participation for patients with PCa. The secondary objective was to examine survival outcomes in the clinical trial and control cohorts. Methods: The National Cancer Database (NCDB) was queried for patients with PCa who were coded as having enrolled in a clinical trial. Trial patients were matched in a 1:8 ratio to controls based on clinical stage. Sociodemographic variables were compared between the two groups and univariate and multivariate logistic regression models evaluated factors associated with clinical trial participation. Kaplan-Meier product limit estimate was used to compare overall survival (OS) between the groups. Results: From 2004-2015, 495 patients enrolled in clinical trials were included for analysis. The mean age of trial patients was 63.2 compared to 66.4 in the matched cohort (p < 0.0001). More patients in the trial group had a Charlson-Deyo comorbidity score of 0 (89.3% vs. 82.1%, p = 0.0002). On multivariate analysis, patients who traveled between 50-250 miles (OR 1.59; 95%CI 1.15-2.19, p = 0.005) or came from a zip code where greater than 93% of the population has a high school degree (OR 4.97; 95%CI 2.89-8.54, p < 0.0001) were more likely to participate in a clinical trial. There was no association between race and insurance status on clinical trial participation. Median OS was not significantly different among clinical trial participants than the control cohort (120.9 months vs. not reached, p = 0.928). Conclusions: In this contemporary analysis of PCa patients from a national hospital registry database, we found that certain patient sociodemographic factors remain associated with clinical trial participation, though clinical trial participants do not seem to experience a difference in OS. Further work, both qualitative and quantitative, is necessary to identify clinical and non-clinical barriers to research participation in order to improve the validity of PCa trials.


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