Session Information
Session Type: ACR Poster Session A
Session Time: 9:00AM-11:00AM
Background/Purpose: African Americans (AA) with lupus experience severe manifestations and outcomes, and a long journey to diagnosis and care. We developed and tested evidence-based, culturally appropriate, scalable lupus education modules, one targeting the diverse AA community and one targeting primary care providers (PCPs). This curriculum was designed to disseminate lupus-related education, reduce stigma, and promote healthcare-seeking norms.
Methods: Rheumatology, public health and behavioral health experts from 2 academic institutions in Boston and Chicago developed 2 learning modules. The first was a didactic and participatory community-based curriculum for Popular Opinion Leaders (POLs). Based on a CDC model, POLs are community leaders trained to disseminate information through their social networks. The goal was to provide predominately AA POLs with lupus education and dissemination materials to improve awareness and promote positive health-seeking behaviors in their communities. The second included videos geared towards PCPs using motivational interviewing principles to improve culturally competent provider communication skills. To prepare both modules, we conducted a literature review on lupus disparities, racial discrimination and social determinants of health. We engaged key academic and community-based AA stakeholders and experts in an iterative process regarding curriculum content, cultural competency, dissemination materials and implementation strategies. POL and physician modules and materials were piloted and reviewed by POLs in Boston and Chicago and by key community stakeholders. Central themes from curriculum feedback were extracted after review of detailed notes.
Results: The community-based POL curriculum included lupus education, POL model principles, community research methods, and dissemination strategies. The POL training was delivered in Boston (N=18) and Chicago (N=19) in four 2-3 hour sessions. Materials included slide presentations, videos, role-plays, data monitoring exercises, and palm cards to facilitate dissemination. Multiple themes from community feedback were extracted (Table). The provider curriculum included video web-based modules using actors with scripted scenarios, and “do over” patient-doctor scenarios to demonstrate flawed interactions and subsequent improvement, supplemented by didactic materials. Physician modules were reviewed by the POLs and stakeholders for feedback and were approved for CME credit.
Conclusion: We utilized an interdisciplinary approach involving community-based and academic stakeholders to develop educational modules specific for the AA community. We incorporated nuanced and diverse feedback from community members in 2 cities to develop this tool. Our next step is to facilitate national dissemination.
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Table. Key Themes from Popular Opine Leader and Community Stakeholder Curriculum Feedback |
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POL Curriculum |
Health Provider Video |
Dissemination Materials |
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Popular Opinion Leaders (POL) participating in pilot in Boston (N=18) and in Chicago (N=19) |
Theme 1: Development of an “African-American” Specific Model |
Theme 1: Hair Loss as a Culturally Significant Symptom of Lupus |
Theme 1: Palm Cards as a Dissemination Tool |
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– Concerns about meaning of a targeted “African American (AA) POL model” in setting of significant heterogeneity of the black community by culture, religion, language and socioeconomic status |
–Important for providers to understand relevance of hair when treating African American lupus patients-Hair loss may not be most important symptom for all AA patients, need to consider pain, fatigue and kidney problems
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-Palm card with information about lupus symptoms and contact information for Lupus Foundation of America (LFA) and Lupus Society of Illinois (LSI) was well received-Palm card needs more facts about lupus including an explanation that lupus is not contagious, especially in cases of discoid lupus, so that strangers would feel more comfortable talking with them |
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Theme 2: Curriculum Content and Presentation |
Theme 2: Perceived Discrimination |
Theme 2: Creating Materials for a Wider Audience |
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-Need more information about clinical trials; Boston or Chicago specific lupus research, choosing a rheumatologist, environmental risk-factors, medications and how they work for different people/ co-morbidities, mental health and lupus -Pictorials, videos and other interactive methods were most effective learning tools |
-Discrimination is not always the main issue for AA lupus patients. Some doctors just don’t know enough about lupus and recognizing signs/symptoms-Important to highlight specific discrimination faced by female patients in medical system; providers are dismissive about their pain and equate fatigue with laziness -Female patients often feel more comfortable seeing female providers because they can better relate to their experience |
– Need more information appropriate for school-aged children and families. – Need to engage men – Need dissemination materials in other languages (e.g. Spanish, Portuguese, French) |
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Theme 3: Evaluation Methods |
Theme 3: Patient-Provider Communication |
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-POLs reported feeling flustered and/or overwhelmed by multiple-choice format of pre/post-tests; were reluctant to hand in forms; key points should be clearly presented in slides -Other POLs reported test questions were too easy
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-Providers need to build rapport and address patient’s concerns -Providers should be encouraged to be more open and candid with their patients about clinical tests, results and treatment o Individuals felt that meaning and significance of test results aren’t explained o Individuals felt side effects from medications were not appreciated and contributed to more problems |
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Community Stakeholders with experience with academic-community partnerships (N=3) |
Theme 1: Tailoring Curriculum to Target City |
Theme 1: Patient Rights |
Theme 1: Dissemination Tracking |
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–Importance of including city-specific information in curriculum content o Local statistics regarding demographics and lupus prevalence o Relevant research studies including clinical trials particularly involving local city
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–Video highlights patients need to know that they have options when seeing a rheumatologist -It is important that patients have access to information about the treating physician – Partnerships between physicians and patients are important to highlight |
-Emphasis on working with the LFA and LSI to track effectiveness of dissemination by measuring changes in call volume and documenting callers who reference the palm cards |
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Theme 2: Perception of Research |
Theme 2: Cultural humility |
Theme 2: Palm Card Content |
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-Include information about perception of research and clinical trials within the community |
–The viewer should recognize that physicians should treat patients with empathy |
-Materials should include all available lupus related resources locally -Palm cards depicting AA families are more appealing to different audiences |
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Theme 3: Colorism concept -In addition to attention on hair, need to consider incorporating this concept in future modules |
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Theme 4: Diagnosis delays |
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Video addresses a poor patient-doctor encounter but not delays to diagnosis that AA patients with lupus face |
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Theme 5:Language-related feedback |
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Language thought to be clear and easy to understand. Feedback that AA should not be described as “minorities” and term replaced with “underrepresented population” |
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To cite this abstract in AMA style:
Mancera-Cuevas K, Phillip C, Leatherwood C, Correia C, Brucker J, Freeman E, Granville G, Mimms K, Canessa P, Feldman CH, Ramsey-Goldman R. Development of an African American Lupus Community-Based Patient and Provider Education Program: Lupus Conversations [abstract]. Arthritis Rheumatol. 2018; 70 (suppl 9). https://acrabstracts.org/abstract/development-of-an-african-american-lupus-community-based-patient-and-provider-education-program-lupus-conversations/. Accessed .« Back to 2018 ACR/ARHP Annual Meeting
ACR Meeting Abstracts - https://acrabstracts.org/abstract/development-of-an-african-american-lupus-community-based-patient-and-provider-education-program-lupus-conversations/