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Let's Talk about Lupus. Overview of an Innovative, High-Reach, Online Program to Fill the Education Gaps of Latin Americans Living with Lupus

  • Cristina Drenkard(corresponding author)
    ,
  • Yurilis Fuentes-Silva
    ,
  • Luciana Parente Costa Seguro
    ,
  • Edgard Torres Dos Reis-Neto
    ,
  • Soledad Ibañez
    ,
*Corresponding author for this work
  • Emory School of Medicine
    ,
  • Universidad de Oriente - Núcleo Bolívar
    ,
  • University of São Paulo
    ,
  • Universidade Federal de São Paulo
    ,
  • Sanatorio Guemes
    ,
Research Output:
Contribution to journal
Article
Peer-review

Open access

Publication Information

Output type

Research Output:
Contribution to journal
Article
Peer-review

Original language

English

Pages from-to (Number of pages)

Pages 368-374 (7 pages)

Journal (Volume, Issue Number)

Journal of clinical rheumatology : practical reports on rheumatic & musculoskeletal diseases (Volume 28, Issue 2)

Publication milestones

  • Published - 01/03/2022

Publication status

Published - 01/03/2022

ISSN

1076-1608

Publication IDs

  • Scopus: 85104691673
  • PubMed: 34014052

Abstract

Background/Objective The Latin American population living with lupus lacks reliable and culturally competent health education resources. We describe a Spanish and Portuguese online program to educate Latin American people about lupus. Methods An extensive network of Latin American stakeholders participated in the program design, implementation, dissemination, and evaluation. Patients and rheumatologists selected core topics. Rheumatologists prepared the content using evidence-based data. Adaptations were conducted to meet the audience's health literacy and cultural values. Social media was used to post audiovisual resources and facilitate users' interactions with peers and educators, and a Web site was created to offer in-depth knowledge. Results The most massive outreach was through Facebook, with more than 20 million people reached and 80,000 followers at 3 months, between the Spanish and Portuguese pages. Nearly 90% of followers were from Latin America. A high engagement and positive responses to a satisfaction survey indicate that Facebook users valued these resources. The Spanish and Portuguese Web sites accumulated more than 62,000 page views, and 71.7% of viewers were from Latin American. Conclusions The engagement of patients and stakeholders is critical to provide and disseminate reliable lupus education. Social media can be used to educate and facilitate interactions between people affected by lupus and qualified health care professionals. Social media-based health education has extensive and scalable outreach but is more taxing for the professional team than the Web site. However, the Web site is less likely to be used as a primary education source by Latin American people because they value social interactions when seeking lupus information.

Funding Details

The Spanish and Portuguese versions of the Let's Talk About Lupus Program (Hablemos de Lupus and Falando de Lúpus) received financial support from the International League of Associations for Rheumatology, the Pan American League of Associations for Rheumatology (PANLAR), and Glaxo Smith Kline (GSK).
FundersFunding numbers
Glaxo Smith Kline
-
Hablemos de Lupus and Falando de Lúpus
-
Let's Talk About Lupus Program
-
Pan American League of Associations for Rheumatology
-