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

被引:21
作者
Drenkard, Cristina [1 ]
Fuentes-Silva, Yurilis [2 ]
Costa Seguro, Luciana Parente [3 ]
Torres dos Reis-Neto, Edgard [4 ]
Ibanez, Soledad [5 ]
Elera-Fitzcarrald, Claudia [6 ]
Reategui-Sokolova, Cristina [7 ]
Athayde Linhares, Fernanda [8 ]
Bermudez, Witjal [9 ]
Ferreyra-Garrot, Leandro [10 ]
Acosta, Carlota [11 ]
Caballero-Uribe, Carlo, V [12 ]
Inoue Sato, Emilia [4 ]
Bonfa, Eloisa [3 ]
Pons-Estel, Bernardo A. [13 ]
机构
[1] Emory Univ, Sch Med, Dept Med, Atlanta, GA 30303 USA
[2] Univ Oriente, Dept Med, Ciudad Bolivar, Venezuela
[3] Univ Sao Paulo, Hosp Clin HCFMUSP, Fac Med, Rheumatol Div, Sao Paulo, Brazil
[4] Univ Fed Sao Paulo, Escola Paulista Med, Sao Paulo, Brazil
[5] Sanatorio Guemes Hosp Privado, Buenos Aires, DF, Argentina
[6] Univ Cient Sur, Fac Med, Lima, Peru
[7] Univ San Ignacio Loyola, Lima, Peru
[8] Inst Nacl Reumatol Uruguay, La Habanna, Cuba
[9] Hosp Clin Quirurg, La Habanna, Cuba
[10] Hosp Italiano Buenos Aires, Bs As, Argentina
[11] Hosp Univ Ruiz & Paez, Ciudad Bolivar, Venezuela
[12] Univ Norte, Barranquilla, Colombia
[13] Ctr Reg Enfermedades Autoinmunes & Reumat GO CREA, Grp Orono, Rosario, Argentina
关键词
health education; self-management; social media; systemic lupus erythematosus; MULTIETHNIC COHORT; ERYTHEMATOSUS; LUMINA; HEALTH; PREVALENCE; ARTHRITIS; ANCESTRY; COUNTY;
D O I
10.1097/RHU.0000000000001728
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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.
引用
收藏
页码:E368 / E374
页数:7
相关论文
共 36 条
  • [1] Revisiting the online health information reliability debate in the wake of "web 2.0": An inter-disciplinary literature and website review
    Adams, Samantha A.
    [J]. INTERNATIONAL JOURNAL OF MEDICAL INFORMATICS, 2010, 79 (06) : 391 - 400
  • [2] Systemic lupus erythematosus in a multiethnic cohort:: LUMINA XXXV.: Predictive factors of high disease activity over time
    Alarcon, G. S.
    Calvo-Alen, J.
    McGwin, G., Jr.
    Uribe, A. G.
    Toloza, S. M. A.
    Roseman, J. M.
    Fernandez, M.
    Fessler, B. J.
    Vila, L. M.
    Ahn, C.
    Tan, F. K.
    Reveille, J. D.
    [J]. ANNALS OF THE RHEUMATIC DISEASES, 2006, 65 (09) : 1168 - 1174
  • [3] Systemic lupus erythematosus in a multi-ethnic cohort (LUMINA):: contributions of admixture and socioeconomic status to renal involvement
    Alarcón, GS
    Bastian, HM
    Beasley, TM
    Roseman, JM
    Tan, FK
    Fessler, BJ
    Vilá, L
    McGwin, G
    Reveille, JD
    [J]. LUPUS, 2006, 15 (01) : 26 - 31
  • [4] Systemic lupus erythematosus in three ethnic groups:: III A comparison of characteristics early in the natural history of the LUMINA cohort
    Alarcón, GS
    Friedman, AW
    Straaton, KV
    Moulds, JM
    Lisse, J
    Bastian, HM
    McGwin, G
    Bartolucci, AA
    Roseman, JM
    Reveille, JD
    [J]. LUPUS, 1999, 8 (03) : 197 - 209
  • [5] [Anonymous], 2004, COMMITTEE CROSSING Q
  • [6] Antero Reto Luis, 2012, POTENCIAL EC LINGUA
  • [7] The emerging Web 2.0 social software: an enabling suite of sociable technologies in health and health care education
    Boulos, Maged N. Kamel
    Wheeler, Steve
    [J]. HEALTH INFORMATION AND LIBRARIES JOURNAL, 2007, 24 (01) : 2 - 23
  • [8] US patients of Hispanic and African ancestry develop lupus nephritis early in the disease course: data from LUMINA, a multiethnic US cohort (LUMINA LXXIV)
    Burgos, Paula I.
    McGwin, Gerald, Jr.
    Pons-Estel, Guillermo J.
    Reveille, John D.
    Alarcon, Graciela S.
    Vila, Luis M.
    [J]. ANNALS OF THE RHEUMATIC DISEASES, 2011, 70 (02) : 393 - U193
  • [9] Health-related Internet use by lupus patients in southern Spain
    Callejas-Rubio, Jose-Luis
    Rios-Fernandez, Raquel
    Barnosi-Marin, Ana-Celia
    Garcia-Hernandez, Francisco-Jose
    Vargas-Hitos, Jose-Antonio
    Camps-Garcia, Maria-Teresa
    Gonzalez-Nieto, Jose-Antonio
    Sanchez-Roman, Julio
    Jimenez-Alonso, Juan
    de Ramon Garrido, Enrique
    Otego-Centeno, Norberto
    [J]. CLINICAL RHEUMATOLOGY, 2014, 33 (04) : 567 - 573
  • [10] Treatment adherence and clinical outcome in systemic lupus erythematosus
    Chambers, S. A.
    Rahman, A.
    Isenberg, D. A.
    [J]. RHEUMATOLOGY, 2007, 46 (06) : 895 - 898