Evidence map›Paper›PMID 33973413›Full record

ArticleArthritis care & research2021

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

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

Abstract readMulticenter Study
In one paragraph

Article in Arthritis care & research, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Rodlescia S SneedMichigan State University, East Lansing.ORCID 0000-0001-7732-6197
Maryann MasonFeinberg School of Medicine, Northwestern University, Chicago, Illinois.
Jessica N WilliamsBrigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.ORCID 0000-0002-1134-9625
Corine SinnetteBrigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.
Kreager TaberBrigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.
Karen Mancera-CuevasIllinois Department of Public Health, Springfield, and Feinberg School of Medicine, Northwestern University, Chicago, Illinois.
Gina CurryUniversity of Chicago, Chicago, Illinois.
Patricia Canessallinois Public Health Association, Springfield, Illinois.
Rosalind Ramsey-GoldmanFeinberg School of Medicine, Northwestern University, Chicago, Illinois.ORCID 0000-0001-8712-787X
Candace H FeldmanBrigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts.ORCID 0000-0002-4980-9770

Funding

Michigan Center for Urban African American Aging Research - RESEARCH CORE (REC)P30AG015281 · NIA · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI Briana Mezuk · 1997 to 2026
$19.3M
The Flint Center for Health Equity SolutionsU54MD011227 · NIMHD · MICHIGAN STATE UNIVERSITY · PI SADLER, RICHARD CASEY · 2016 to 2020
$10.7M
PATIENT-ORIENTED RESEARCH: SYSTEMIC LUPUS ERYTHEMATOSUSK24AR002138 · NIAMS · NORTHWESTERN UNIVERSITY AT CHICAGO · PI RAMSEY-GOLDMAN, ROSALIND · 2000 to 2009
$1.0M
NIAMS NIH HHS K24 AR002138NIA NIH HHS P30 AG015281NIMHD NIH HHS L60 MD014430NIMHD NIH HHS U54 MD011227U.S. Department of Health and Human Services 1 CPIMP181168-01-00
6 · The paper itself

Abstract

objectiveBlack patients with systemic lupus erythematous (SLE) experience greater disease incidence and severity than White patients, and yet they are underrepresented in SLE clinical trials. We applied Critical Race Theory to qualitatively explore the influence of racism on the underrepresentation of Black patients in SLE clinical trials and to develop a framework for future intervention.

methodsWe conducted focus group sessions in Chicago and Boston with Black adults (ages ≥18 years) with SLE and their caregivers. We queried the participants about their knowledge regarding clinical trials, factors that might motivate or hinder trial participation, and how race and experiences of racism might impact clinical trial participation. Focus group responses were transcribed verbatim and analyzed thematically.

resultsWe held 4 focus groups (n = 31 participants); 20 participants had SLE, and 11 were caregivers. All participants were Black, 90% were women, and the mean age was 54 years. Qualitative analyses revealed several themes that negatively impact trial participation, including mistrust related to racism, concerns about assignment to placebo groups, strict study exclusion criteria, and SLE-related concerns. Factors that motivated trial participation included recommendations from physicians and reputable institutions, a desire to help the greater good, and culturally sensitive marketing of trials.

conclusionActions to improve clinical trial participation among Black individuals should focus on reframing how trial information is presented and disseminated and on reevaluating barriers that may restrict trial participation. Additionally, researchers must acknowledge and respond to the presence of racial bias in health care. Community-academic partnerships may help build trust and reduce fears of mistreatment among Black individuals with SLE.

Indexed as

Clinical Trials as TopicPatient SelectionRacismAdultAgedBlack or African AmericanBostonChicagoFemaleFocus GroupsHealth Knowledge, Attitudes, PracticeHumansLupus Erythematosus, SystemicMaleMiddle AgedMotivation

Identifiers

PMID33973413
PMCPMC8557360

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.