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Educational website incorporating rheumatoid arthritis patient needs for Latin American and Caribbean countries

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Abstract

Health education is fundamental in the management of RA patients. This study explored patient needs for educational material appropriate for RA patients in our region through a website. This study includes seven focus groups and semi-structured interviews across 4 countries (Argentina, Chile, Colombia, and Mexico) with 71 RA patients. Transcripts were analyzed by anthropologists using qualitative analysis (QA), resulting in themes and subthemes to be developed. Five themes and over 50 subthemes of interest were identified by patients. Grouped into categories as follows: (1) knowing the disease, (2) living with arthritis, (3) treatment and therapies for RA, (4) psychosocial support, and (5) information for families. A response was written by the team in plain Spanish on patient subthemes of interest including additional areas that the team considered relevant. Three videos for YouTube were produced: on patient-doctor relationships, patients at work, and home and at the clinic. Illustrations in a comic book format on RA diagnosis were created. The educational site on RA of PANLAR can be found at htpp://artritisreumatoide.cl. This project accomplished a comprehensive list of RA patient interests, revealing the complex relationship between the information on the disease, the experience of a chronic disease, and the way in which patients approach, conceive, and manage their disease. We expect to gather information on how the website will be used in the future for patients and their families and maintain and improve the website as well as adapt its content to different socioeconomic realities.

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Acknowledgements

We would like to thank all the patients and collaborators (Appendix C) who helped to develop this website, the International League of Associations for Rheumatology (ILAR) for the grant to the project Web-based educational program for patients with rheumatoid arthritis in Latin America and the Caribbean countries, to Liga Panamericana de Asociaciones de Reumatología (PANLAR), and to Ms. Teresa Cole for the English version of this manuscript. With support from CONICYT grant PFB12/2007 awarded to Center for Aging and Regeneration (CARE), Facultad de Ciencias Biológicas. Pontificia Universidad Católica de Chile.

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Authors and Affiliations

  1. Facultad de Ciencias Sociales, Instituto de Sociología, Programa de Antropología, Pontificia Universidad Católica de Chile, Av. Vicuña Mackena 4860, Santiago, Chile

    Francisca Massone

  2. Facultad de Medicina, Escuela de Medicina, Departamento de Inmunologìa Clìnica y Reumatologìa, Pontificia Universidad Católica de Chile, Av. Diagonal Paraguay 362, Santiago, Chile

    María Eugenia Martínez

  3. Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Avda. Vasco de Quiroga N° 15, Colonia Belisario Domínguez Sección XVI, Mexico, DF, Mexico

    Virginia Pascual-Ramos

  4. Sanatorio Parque S.A., Bv Oroño 860, Rosario, Provincia de Santa Fe, Argentina

    Rosana Quintana

  5. Centro de Artritis Reumatoide, Clínica Ciudad del Mar, 13 Norte 365, Viña del Mar, Chile

    Lilith Stange

  6. Hospital Universidad del Norte, Calle 30 vía al Aereopuerto,, Barranquilla, Colombia

    Carlo V. Caballero-Uribe

  7. Sección Reumatología, Servicio de Clínica Médica, Hospital Italiano de Buenos Aires, Av. Pte Perón 2231, San Justo, Buenos Aires, Argentina

    Leandro Ferreyra-Garrot

  8. Unidad de Enfermedades Reumáticas y Autoinmunes, Corporación Médica Monte Sinaí, Miguel Cordero 6-111, Cuenca, Ecuador

    María Kourilovitch

  9. Facultad de Ciencias Médicas, Universidad Nacional de Asunción, Herrera 2803, Asunción, Paraguay

    Margarita Duarte

  10. Facultad de Medicina, Universidad de La Frontera, Claro Solar 115, Temuco, Chile

    Carlos Baumert

  11. Hospital San Martín de Quillota, Concepción 1050, Quillota, Chile

    Cristián Vergara

  12. Universidad Mayor de San Simón, Av Melchor Pérez de Olguín, Cochabamba, Bolivia

    Néstor Gareca

  13. Fundación Me Muevo, Roberto del Río 2151 - B, Santiago, Chile

    Cecilia Rodríguez

  14. Cátedra de Reumatología, Departamento de Medicina, Pontificia Universidad Católica Madre y Maestra, Autopista Duarte Km 1 1\2, Santiago, Dominican Republic

    Vianna Khoury

  15. Hospital Nacional Guillermo Almenara, Grau 800, La Victoria, Lima, Peru

    Mariela Medina

  16. Centro de Investigación Clínica de Morelia, Virrey de Mendoza, 1998 502, Morelia, Michoacán, Mexico

    Mario H. Cardiel

  17. Facultad de Medicina, Centro de Biología Celular y Biomedicina, Universidad San Sebastián, Lota 2465, Santiago, Chile

    Loreto Massardo

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  1. Francisca Massone
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  2. María Eugenia Martínez
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  3. Virginia Pascual-Ramos
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  4. Rosana Quintana
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  5. Lilith Stange
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  6. Carlo V. Caballero-Uribe
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  7. Leandro Ferreyra-Garrot
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  8. María Kourilovitch
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  9. Margarita Duarte
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  10. Carlos Baumert
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  11. Cristián Vergara
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  12. Néstor Gareca
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  13. Cecilia Rodríguez
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  14. Vianna Khoury
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  15. Mariela Medina
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  16. Mario H. Cardiel
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  17. Loreto Massardo
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Correspondence to Loreto Massardo.

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Massone, F., Martínez, M.E., Pascual-Ramos, V. et al. Educational website incorporating rheumatoid arthritis patient needs for Latin American and Caribbean countries. Clin Rheumatol 36, 2789–2797 (2017). https://doi.org/10.1007/s10067-017-3866-4

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