Using Critical Race Theory to Understand Trial Participation Among Black Individuals With Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers

Sneed, Rodlescia; Mason, Maryann; Williams, Jessica N.; Sinnette, Corine; Taber, Kreager; Mancera-Cuevas, Karen; Curry, Gina; Canessa, Patricia; Ramsey‐Goldman, Rosalind; Feldman, Candace H.

doi:10.1002/acr.24635

Cited by 11 publications

(15 citation statements)

References 29 publications

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“…Specifically, scores significantly improved on the topics of informed consent, the fact that standard of care is continued in control groups, and the Belmont Report's ethical guidelines for research conduct (Table 3 ). This improvement is meaningful, considering individuals' comfort with those topics had previously been noted to influence clinical trial participation ( 11 ).…”

Section: Discussionmentioning

confidence: 96%

“…Qualitative research has illuminated several factors that contribute to racial disparities in clinical trial participation. Black patients with lupus have identified mistrust of medical and research systems due to experiences of racial discrimination ( 11 ). Other barriers include lack of familiarity with clinical trials, an intimidating consent process, strict exclusion criteria, and concerns about receiving a placebo or a drug with unknown side effects ( 10 , 11 ).…”

Section: Introductionmentioning

confidence: 99%

“…Black patients with lupus have identified mistrust of medical and research systems due to experiences of racial discrimination ( 11 ). Other barriers include lack of familiarity with clinical trials, an intimidating consent process, strict exclusion criteria, and concerns about receiving a placebo or a drug with unknown side effects ( 10 , 11 ). Social support, a desire to help the greater good, diversity in the research team, culturally sensitive communication strategies, and authentic community–academic partnerships (CAPs) are facilitators of research participation ( 3 , 11 ).…”

Section: Introductionmentioning

confidence: 99%

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Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities

Arneson

Taber

Williams

et al. 2022

Arthritis Care & Research

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Objective Clinical trials for systemic lupus erythematosus (“lupus”) under enroll Black individuals despite higher disease prevalence, morbidity, and mortality among Black compared to White individuals. To begin to address this disparity, we leveraged community–academic partnerships in 2 US cities (Boston and Chicago) to train popular opinion leaders (POLs) to disseminate information about clinical trials in predominantly Black communities. Methods The team of community and academic partners collaboratively developed a 5‐module curriculum about clinical trials, barriers, facilitators, and structural racism in research. We enrolled POLs in Boston and Chicago to participate virtually in the curriculum and assessed knowledge gained by comparing pre‐ and post‐test scores. We described the POLs' ability to disseminate information about clinical trials through their communities. Results We enrolled 19 POLs in Boston and 16 in Chicago; overall, 71% reported a lupus diagnosis, 94% were female, and 80% self‐identified as Black or African American. The program was adapted to virtual formats due to the COVID‐19 pandemic. POLs demonstrated significant improvement comparing pre/post scores for the conduct of clinical trials and history of racism in clinical research. Fifteen POLs (43%) reported their dissemination of information about clinical trials. Information reached 425 community members in Boston (90% virtually) and 1,887 in Chicago (95% virtually). Conclusion By leveraging community–academic partnerships, we developed and implemented a curriculum to promote familiarity with clinical trials, leading to information dissemination by POLs in predominantly Black communities that are underrepresented in lupus clinical trials. The program successfully transitioned to a virtual model during the COVID‐19 pandemic.

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Section: Discussionmentioning

confidence: 96%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities

Arneson

Taber

Williams

et al. 2022

Arthritis Care & Research

Self Cite

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“…[99][100][101] Further, consciously making efforts to include disenfranchised groups of people in the research process may address the lack of inclusion of people of color in clinical trials. 102 Additionally, our review found that most race-related investigations focused on Black and White people. Fewer investigations focused on Latino/health outcomes, and no articles explicitly focused on AI/AN populations, despite AI/AN people having the worst SLE health outcomes.…”

Section: Clinical Practicementioning

confidence: 99%

An ecological approach to understanding and addressing health inequities of systemic lupus erythematosus

Reid

Danguecan

Colindres

et al. 2023

Lupus

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Systemic Lupus Erythematosus (SLE) is a complex chronic autoimmune disease disproportionally afflicting women and, in particular, American Indian/Alaska Native, Black, and Hispanic women. These groups of women have significantly worse SLE-related health outcomes which are partially attributable to their exposure to marginalizing and interconnecting social issues like racism, sexism, economic inequality, and more. Although these groups of women have higher rates of SLE and though it is well known that they are at risk of exposure to marginalizing social phenomena, relatively little SLE literature explicitly links and addresses the relationship between marginalizing social issues and poor SLE-health outcomes among these women. Therefore, we developed a community-engaged partnership with two childhood-SLE diagnosed women of color to identify their perspectives on which systemic issues impacted on their SLE health-related outcomes. Afterward, we used Cochrane guidelines to conduct a rapid review associated with these identified issues and original SLE research. Then, we adapted an ecological model to illustrate the connection between systems issues and SLE health outcomes. Finally, we provided recommendations for ways to research and clinically mitigate SLE health inequities.

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“…4,[14][15][16][17][18] Improved patient-clinician communication can in turn increase trust in the clinician, build rapport, and improve patients' consideration of participation in lupus clinical trials 5,19,20. Conclusions Improving equity in patients' opportunities to participate in lupus clinical trials is essential to address disparities in clinical trial participation, and ultimately improve health outcomes.…”

mentioning

confidence: 99%

620 Creating a culture of clinical research in the clinic: Integrating clinical trials into the care of patients with lupus

Sheikh

Englund²,

Hogan³

et al. 2022

Clinical Research in SLE

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either reassured if FHRM was normal or referred for emergency fetal echo in < 6 hours if abnormal. Results 250 anti-Ro pregnant women (22% Hispanic, 50% white, 12% Black, 12% Asian, 4% other) have been consented, including 28 whose previous child had AVB. Of mothers tested to date, 153 were provided home monitors given high titer anti-Ro60 and/or 52 antibodies (26 high titer anti-Ro60 alone, 21 high titer anti-Ro52 alone,105 high titer antibodies to both antigens).The 83 patients with low titers were surveilled with echos per local standard of care. Regarding maternal diagnosis, of 161 assessed to date, 39% were asym/UAS, 11% RA, 31% SS, 19% SLE. Antibody titers did not significantly differ by ethnicity, race or diagnosis (table 1). Non-AVB APOs occurred in 18% and were not predicted by Ro60 or 52 titers but rather SLE diagnosis (table 2). In total, 24,759 FHRM audiotexts were received from 131 patients (90 of whom have delivered) during the monitoring period. Of these, 22 were evaluated by the on-call pediatric cardiologist, who prompted an emergency echo (all completed in < 6 hrs). In 11 cases, the emergency echo was normal. In 9, there were premature atrial contractions, confirming the mother's perception. In 2 with 2°block on urgent echo (both treated per protocol with IVIG and dexamethasone), 1 reverted to normal sinus rhythm and the other progressed to 3°block. In 2 others, the mother did not perceive abnormal FHRM for > 24 hrs, echo identified 3°block, and retrospective cardiology review of FHRM audio captures identified an abnormality prior to obtaining the echo. All 4 AVB developed in fetuses of mothers with high titer antibodies to both Ro60 and 52 (mean 32,451 and 34,991 respectively). Of the 18 mothers with a previous AVB child who followed the 400mg hydroxychloroquine PATCH protocol, 1 developed AVB in accord with the results of Step 1 in that study. Conclusion These data support that APOs in this clinically diverse group of mothers are not influenced by anti-Ro titer or specificity, but rather SLE diagnosis. All conduction defects were initially identified by FHRM and in mothers with high titer anti-Ro60 and 52. Hydroxychloroquine continues to show efficacy in reducing the AVB recurrence rate with rapid intervention of emergent block being promising.

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Using Critical Race Theory to Understand Trial Participation Among Black Individuals With Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers

Cited by 11 publications

References 29 publications

Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities

Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities

An ecological approach to understanding and addressing health inequities of systemic lupus erythematosus

620 Creating a culture of clinical research in the clinic: Integrating clinical trials into the care of patients with lupus

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