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

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.

Community-Engaged Research: Leveraging Community-Academic Partnerships to Reduce Disparities and Inequities in Lupus Care.

Community-engaged research is an effective tool to address health care disparities and inequities in lupus care. Community-based participatory research allows the highest degree of community engagement, but may be limited by the challenges associated with long-term funding and implementation. Community-academic partnerships are a feasible way to allow for varying degrees of community engagement and develop sustainable infrastructure. Two examples of community-engaged research in rheumatology are MONARCAS and Lupus Conversations.

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

OBJECTIVE: Black 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. METHODS: We 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. RESULTS: We 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. CONCLUSION: Actions 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.

Addressing Lupus Health Disparities: The MONARCAS Community and Academic Collaborative Program.

Purpose: The Centers for Disease Control (CDC) Popular Opinion Leader (POL) model was implemented in a lupus education program (MONARCAS) for the Latino community. The program aim was to increase lupus awareness by training high school students, community health workers, and parents. Methods: A curriculum was developed training POLs to disseminate concepts about lupus signs and symptoms. Pre- and post-program questions assessed lupus knowledge and message dissemination. Results: POL groups represented distinct demographic characteristics with Spanish or English language dominance. POLs reported increased lupus knowledge and program satisfaction. Conclusions: Future program goals should aim to increase understanding and improving access to care for Latino communities affected by lupus.

La escritura en niños con trastorno específico de lenguaje desde una perspectiva psicogenética / The handwriting in children with specific language disorder from a psychogenetic perspective

El propósito del presente trabajo es conocer el desempeño escrito que tienen los niños con Trastorno Específico del Lenguaje (TEL). Este estudio se basa en la Teoría Psicogenética que propone que el lenguaje escrito comienza a desarrollarse en etapas previas a su enseñanza formal. Se confeccionó una pauta que incluye una serie de tareas para elicitar la escritura y criterios que permiten analizarla. Se compararon las producciones escritas de niños con TEL expresivo con las realizadas por niños sin problemas de lenguaje. Los resultados indican que los niños con TEL expresivo presentan un desarrollo similar al del grupo control, pero más lento. Además, se observó que los niños con TEL que tenían dificultades en la fonología y en la morfosintaxis evidenciaban un desempeño inferior en la escritura que los menores que solo presentaban trastorno fonológico.