Factors Associated With Participation in Rheumatic Disease–Related Research Among Underrepresented Populations: A Qualitative Systematic Review

Abstract

Objective Nonwhite racial/ethnic groups remain underrepresented in rheumatic disease–related research, despite being disproportionately affected by these disorders. Our objective was to systematically review the literature regarding underrepresented patients’ perceptions of participation in rheumatic disease research and to develop strategies to improve diversity. Methods A systematic search of Embase, PubMed/Medline, PsycINFO, and Cochrane was performed through October 2018. Two independent reviewers identified 642 unique studies; 7 met inclusion criteria (peer‐reviewed articles, published in English in the last 20 years, adult population, and with a focus on underrepresented patients’ participation in rheumatic research). Five coauthors provided final approval of included articles. Data abstraction was performed, and common themes and key differences were determined and adjudicated. Results The 7 articles included (n = 1,892 patients, range per article 20–961) evaluated factors associated with research participation of underrepresented populations. Five articles were related to lupus and 2 to rheumatoid arthritis, and 5 focused on African American patients and 1 on Hispanic patients. Five of the studies provided quantitative data through surveys (n = 3) and chart review (n = 2), while 2 used qualitative analyses. Key themes regarding underrepresented patients’ perceptions of participating in research included: 1) the importance of trust in the patient– physician relationship, 2) the understanding of heterogeneity within and between ethnic groups, 3) the need for authentic academic‐community partnerships, and 4) the implications of strict inclusion criteria on study participant diversity. Conclusion Limited evidence exists regarding underrepresented patients’ attitudes toward research participation in rheumatology, and further investigation is warranted. The themes identified provide a starting point for future interventions that promote increased diversity in rheumatic disease–related research studies.

Is it me? The impact of patient–physician interactions on lupus patients’ psychological well-being, cognition and health-care-seeking behaviour

“…Owing to a very low proportion of non-white respondents to the survey, it was not possible to ensure a representative range of ethnic groups for the interviews. This under-representation is, unfortunately, common in rheumatological research [ 41 ] and might have influenced the results owing to differences in symptoms [ 42 ] and disease severity between ethnic groups, indicating the potential for a disproportionate adverse impact of delayed diagnosis [ 43 ]. Ethnicity might also differentially impact patients’ experience of both lupus [ 7 ] and interactions with physicians [ 44 ].…”

Widening Disparities Among Patients With Rheumatic Diseases in the COVID‐19 Era: An Urgent Call to Action

“…Among patients with systemic lupus erythematosus (SLE), where these disparities have been shown to be particularly pronounced, prolonged glucocorticoid use and delayed or lack of standard‐of‐care immunosuppressive use is common, and hydroxychloroquine (HCQ), the backbone of SLE therapy to prevent flares and organ damage, is underprescribed and adherence is suboptimal (). In addition, despite an at least 2–3‐fold higher prevalence of SLE and significantly poorer outcomes, African American individuals are much less likely to be enrolled in clinical trials compared to white individuals (). Structural racism, historic injustices in research, implicit bias by health providers, and ongoing experiences of discrimination contributing to patient distrust all contribute to this under‐enrollment ().…”

“…In addition, despite an at least 2–3‐fold higher prevalence of SLE and significantly poorer outcomes, African American individuals are much less likely to be enrolled in clinical trials compared to white individuals (). Structural racism, historic injustices in research, implicit bias by health providers, and ongoing experiences of discrimination contributing to patient distrust all contribute to this under‐enrollment (). As a result, we often recommend treatments that have not been well‐studied in the populations that may need them the most.…”

“…Particular attention to these populations is essential as we investigate COVID‐19 treatments and prophylaxis using rheumatology‐related medications and other medications. It is also critical to recognize the role of both historic and current racial discrimination when we promote diverse clinical trial enrollment (). In addition, when we conduct observational studies examining the effects of rheumatic disease medications on COVID‐19 incidence and severity, we need to recognize differences in the burden of comorbidities, prior access to care, and in receipt of HCQ and immunosuppressive medications by race/ethnicity and SES that may bias associations.…”

Removing barriers and disparities in health: lessons from the COVID-19 pandemic

“…As with COVID-19, SLE is more prevalent in minority racial or ethnic groups worldwide 7 . Outcomes also tend to be worse for Black people in the USA, who are more likely to develop lupus nephritis and have higher mortality rates than white people 8 . The reasons Removing barriers and disparities in health: lessons from the COVID-19 pandemic Emily Sirotich 1 ✉ and Jonathan S. Hausmann 2,3 The COVID-19 pandemic has compelled the global community to work together to understand SARS-CoV-2 and mitigate its effects, but it has also highlighted health disparities faced by people from minority racial or ethnic groups and other marginalized populations.…”