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

Abstract

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.

Reply

“…The POL model is an evidence-based social network model that is supported by the Centers for Disease Control and Prevention (10). This model, building on diffusion of innovation principles, has been successfully utilized to engage community leaders to disseminate information, change norms, and promote positive health behaviors associated with, but not limited to, lupus, HIV, violence prevention, concussion prevention, and organ donation within a community (11)(12)(13)(14)(15)(16)(17)(18)(19). The tailored messaging endorsed by this intervention will be community-driven to best reflect practices that key opinion leaders believe will be effective in their local communities.…”

Addressing health disparities as a function of ethnicity in systemic lupus erythematosus patients

“…3 Educational interventions spreading lupus awareness in US disadvantaged populations have been conducted, such as the implementation of community-based lupus education programs among Boston and Chicago AA communities, among Chicago Hispanics through the "MONARCAS" program, and among Spanish and Portuguese speaking LA patients in Hablemos de lupus/Falando de lupus. [90][91][92] Although important, these resources are not a substitute for a solid doctor-patient encounter that remains as an essential ingredient to educate the patient and improve clinical outcomes.…”

Choosing to End African American Health Disparities in Patients With Systemic Lupus Erythematosus

“…3 Racial health disparities in patients with SLE are seen worldwide. [4][5][6][7] Since the description of SLE syndrome by Kaposi in 1872, our management and understanding of its course, its cause(s) and impact have advanced. 8 These advances include the discovery of the lupus erythematosus cell, demonstration of its autoimmune basis, 9 and identification of therapeutic targets.…”

“…This disparity has existed for more than 40 years at least, and even though the age‐standardized mortality rate in patients with SLE has improved, the racial disparity remains 3 . Racial health disparities in patients with SLE are seen worldwide 4–7 . Since the description of SLE syndrome by Kaposi in 1872, our management and understanding of its course, its cause(s) and impact have advanced 8 .…”