Race, Ethnicity, and Disparities in Rheumatology Educational Materials.

OBJECTIVE: To characterize the representation of dark skin color in clinical images across 4 major rheumatology training resources. METHODS: We gathered images of patients with rheumatic diseases from the American College of Rheumatology Image Library, UpToDate, the New England Journal of Medicine Images in Clinical Medicine and Clinical Cases filtered by "Rheumatology," and the 9th edition of Kelley's Textbook of Rheumatology. Investigators used Fitzpatrick's skin phototypes to independently code images depicting visible skin as "light" (skin types I to IV), "dark" (skin types V to VI), or "indeterminate." The representation of dark skin in clinical images was compared to the representation of Asian, Native American, and Black individuals within the US Census population and within lupus cases nationally. RESULTS: Of the 1,043 patient images included in the study, 13.4% had dark skin, 84.0% light skin, and 2.6% indeterminate skin color. Dark skin was underrepresented significantly in rheumatology educational materials and lupus images when compared with the representation of Asian, Native American, and Black individuals within the US Census population (13.4% versus 20.6%; χ2  = 32.8, P < 0.001) and in published studies of patients with systemic lupus erythematous (22.6% versus 44.2%; χ2  = 20.0, P < 0.001). CONCLUSION: Darker skin tones are significantly underrepresented in major rheumatology clinical image banks. Improving representation of racial and ethnic minorities in rheumatology education materials can better equip trainees to recognize and diagnose cutaneous manifestations of rheumatic diseases in these groups.

Demographic Characteristics of Participants in Rheumatoid Arthritis Randomized Clinical Trials: A Systematic Review.

Importance: Racial/ethnic minority groups, women, and elderly people experience a disproportionate burden of disease in rheumatoid arthritis (RA), making it particularly important to examine drug therapies in these populations. Despite a national health agenda to improve representation of diverse populations in randomized clinical trials (RCTs), there have been few large-scale analyses examining RCT demographic characteristics within rheumatology and none focusing on RA. Objective: To characterize the representation of racial/ethnic minority groups, women, and elderly people through a comprehensive systematic review of RA RCTs. Data Sources: A literature search of PubMed's MEDLINE database was conducted to identify RA RCTs in adults 19 years and older published in English between January 1, 2008, and January 1, 2018. Study Selection: Randomized double-blind RCTs examining any systemic, disease-modifying therapy were included. Secondary analyses of previously published RCTs were excluded. Of 1195 identified records, 240 articles (20.1%) met final selection criteria. The analysis focused on RCTs with at least 1 US-based site. Data Extraction and Synthesis: Data were extracted and synthesized according to the PRISMA guidelines for systematic reviews. Studies were screened for eligibility criteria. Demographic data on the age, sex, and race/ethnicity of RCT participants were extracted. Data analysis was conducted from October 25, 2018, to March 15, 2019. Main Outcomes and Measures: Representation of race/ethnicity and sex, defined as the proportion of total participants that belonged to each racial/ethnic group or sex. Trends in proportions over time were examined and compared with US demographic data. Results: A total of 240 RCTs with 77 071 participants were included. Of 126 RCTs with at least 1 US-based site (52.5%), the enrollment of minority racial/ethnic groups was significantly lower than their representation within the US Census population (16% vs 40%; P < .001), and the enrollment of men was significantly lower than the incidence of RA in men nationally (20.4% vs 28.6%; P < .001). There was no trend toward improved representation of racial/ethnic minority groups or men over time. Conclusions and Relevance: Given the disproportionate burden of RA among racial/ethnic minority groups, it is imperative that policy makers better incentivize the inclusion of racial/ethnic minority groups in RA RCTs.

Acceptability of a multilevel intervention to improve blood pressure control among patients with chronic kidney disease in a public health care delivery system.

BACKGROUND: The Kidney Awareness Registry and Education (KARE) trial examined the impact of a multilevel intervention on blood pressure control among patients with chronic kidney disease (CKD) in a public health care delivery system. KARE consisted of a clinic-based intervention (a primary care CKD registry with point-of-care provider notifications and quarterly feedback related to CKD management) and a patient-directed intervention [a CKD self-management support (CKD-SMS) program that included low literacy educational materials, automated telephone-administered self-management modules and telephone health coaching]. We explored the acceptability of these interventions among end users. METHODS: At trial conclusion, we surveyed 39 primary care providers (PCPs) to identify preferences about components of the clinic intervention, conducted two focus groups among non-PCP staff to elicit in-depth attitudes and experiences with operationalizing the team-based CKD registry, and conducted eight focus groups with English- and Spanish-speaking patients to hear about their experiences with the CKD-SMS program. Focus group transcripts were analyzed using thematic analysis. Self-reported participation and data from the automated telephone program were used to evaluate patient engagement. RESULTS: Most PCPs (94%) believed that the point-of-care notifications benefited clinic workflow and agreed that quarterly feedback enhanced their ability to identify (89.5%) and manage (73.7%) CKD. Staff confirmed usefulness of point-of-care notifications. Patients suggested the automated telephone system was impersonal, though easy to use; that frequent automated calls were helpful to reinforce self-management behaviors; and that telephone health coaching was convenient. Nearly 40% of patients completed >80% of automated phone calls, 95% participated in calls with their health coach and 77% created at least one action plan. CONCLUSIONS: A CKD registry is acceptable to primary care health care teams and has potential to enhance identification and management of CKD in primary care. Low-income patients appreciated and engaged with a telephone-based CKD-SMS program, demonstrating its potential for increasing awareness and health engagement among populations with CKD within a public health care delivery system.