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Published in: Clinical Rheumatology 12/2017

01-12-2017 | Original Article

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

Authors: Francisca Massone, María Eugenia Martínez, Virginia Pascual-Ramos, Rosana Quintana, Lilith Stange, Carlo V. Caballero-Uribe, Leandro Ferreyra-Garrot, María Kourilovitch, Margarita Duarte, Carlos Baumert, Cristián Vergara, Néstor Gareca, Cecilia Rodríguez, Vianna Khoury, Mariela Medina, Mario H. Cardiel, Loreto Massardo

Published in: Clinical Rheumatology | Issue 12/2017

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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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Metadata
Title
Educational website incorporating rheumatoid arthritis patient needs for Latin American and Caribbean countries
Authors
Francisca Massone
María Eugenia Martínez
Virginia Pascual-Ramos
Rosana Quintana
Lilith Stange
Carlo V. Caballero-Uribe
Leandro Ferreyra-Garrot
María Kourilovitch
Margarita Duarte
Carlos Baumert
Cristián Vergara
Néstor Gareca
Cecilia Rodríguez
Vianna Khoury
Mariela Medina
Mario H. Cardiel
Loreto Massardo
Publication date
01-12-2017
Publisher
Springer London
Published in
Clinical Rheumatology / Issue 12/2017
Print ISSN: 0770-3198
Electronic ISSN: 1434-9949
DOI
https://doi.org/10.1007/s10067-017-3866-4

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