Literature DB >> 29098475

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

Francisca Massone1, María Eugenia Martínez2, Virginia Pascual-Ramos3, Rosana Quintana4, Lilith Stange5, Carlo V Caballero-Uribe6, Leandro Ferreyra-Garrot7, María Kourilovitch8, Margarita Duarte9, Carlos Baumert10, Cristián Vergara11, Néstor Gareca12, Cecilia Rodríguez13, Vianna Khoury14, Mariela Medina15, Mario H Cardiel16, Loreto Massardo17.   

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.

Entities:  

Keywords:  Patient education; Patient needs; Rheumatoid arthritis; Website

Mesh:

Substances:

Year:  2017        PMID: 29098475     DOI: 10.1007/s10067-017-3866-4

Source DB:  PubMed          Journal:  Clin Rheumatol        ISSN: 0770-3198            Impact factor:   2.980


  34 in total

Review 1.  Focus-group interview and data analysis.

Authors:  Fatemeh Rabiee
Journal:  Proc Nutr Soc       Date:  2004-11       Impact factor: 6.297

2.  Improving health outcomes through patient education and partnerships with patients.

Authors:  Timothy E Paterick; Nachiket Patel; A Jamil Tajik; Krishnaswamy Chandrasekaran
Journal:  Proc (Bayl Univ Med Cent)       Date:  2017-01

3.  'I'm hurting, I want to kill myself': rheumatoid arthritis flare is more than a high joint count--an international patient perspective on flare where medical help is sought.

Authors:  Sarah Hewlett; Tessa Sanderson; James May; Rieke Alten; Clifton O Bingham; Marita Cross; Lyn March; Christof Pohl; Thasia Woodworth; Susan J Bartlett
Journal:  Rheumatology (Oxford)       Date:  2011-05-12       Impact factor: 7.580

Review 4.  Rheumatoid arthritis.

Authors:  Josef S Smolen; Daniel Aletaha; Iain B McInnes
Journal:  Lancet       Date:  2016-05-03       Impact factor: 79.321

5.  Early rheumatoid arthritis in Latin America: low socioeconomic status related to high disease activity at baseline.

Authors:  Loreto Massardo; Bernardo A Pons-Estel; Daniel Wojdyla; Mario H Cardiel; Claudio M Galarza-Maldonado; Mónica P Sacnun; Enrique R Soriano; Ieda M Laurindo; Eduardo M Acevedo-Vásquez; Carlo V Caballero-Uribe; Oslando Padilla; Zoila M Guibert-Toledano; Licia M da Mota; Rubén A Montufar; Leticia Lino-Pérez; José F Díaz-Coto; Angel F Achurra-Castillo; Jaime A Hernández; María H Esteva-Spinetti; Luis A Ramírez; Carlos Pineda; Daniel E Furst
Journal:  Arthritis Care Res (Hoboken)       Date:  2012-08       Impact factor: 4.794

6.  Treatment of early rheumatoid arthritis in a multinational inception cohort of Latin American patients: the GLADAR experience.

Authors:  Mario H Cardiel; Bernardo A Pons-Estel; Mónica P Sacnun; Daniel Wojdyla; Verónica Saurit; Juan Carlos Marcos; María Raquel C Pinto; Ana Beatriz Cordeiro de Azevedo; Inês Guimarães da Silveira; Sebastião C Radominski; Antônio C Ximenes; Loreto Massardo; Francisco Ballesteros; Adriana Rojas-Villarraga; Rafael Valle Oñate; Margarita Portela Hernandez; Jorge A Esquivel-Valerio; Ignacio García-De La Torre; Vianna J Khoury; Alberto Millán; Enrique Roberto Soriano
Journal:  J Clin Rheumatol       Date:  2012-10       Impact factor: 3.517

7.  Health-related quality of life in fibromyalgia patients: a comparison with rheumatoid arthritis patients and the general population using the SF-36 health survey.

Authors:  F Salaffi; P Sarzi-Puttini; R Girolimetti; F Atzeni; S Gasparini; W Grassi
Journal:  Clin Exp Rheumatol       Date:  2009 Sep-Oct       Impact factor: 4.473

8.  Symptom Recognition and Perceived Urgency of Help-Seeking for Rheumatoid Arthritis and Other Diseases in the General Public: A Mixed Method Approach.

Authors:  Gwenda Simons; John Belcher; Chris Morton; Kanta Kumar; Marie Falahee; Christian D Mallen; Rebecca J Stack; Karim Raza
Journal:  Arthritis Care Res (Hoboken)       Date:  2017-04-10       Impact factor: 4.794

9.  Evidence-based patient choice and consumer health informatics in the Internet age.

Authors:  G Eysenbach; A R Jadad
Journal:  J Med Internet Res       Date:  2001 Apr-Jun       Impact factor: 5.428

Review 10.  Education for patients with rheumatoid arthritis in Latin America and the Caribbean.

Authors:  Vianna Khoury; Maria Kourilovitch; Loreto Massardo
Journal:  Clin Rheumatol       Date:  2015-07-17       Impact factor: 2.980

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Journal:  Clin Rheumatol       Date:  2018-11-17       Impact factor: 2.980

2.  Rheumatoid arthritis in the indigenous qom population of Rosario, Argentina: aggressive and disabling disease with inadequate adherence to treatment in a community-based cohort study.

Authors:  Rosana Quintana; Mario Goñi; Nora Mathern; Marisa Jorfen; Silvana Conti; Romina Nieto; Alvaro Sanabria; Cristina Prigione; Adriana M R Silvestre; Vanina García; Guillermo Pons-Estel; Ricard Cervera; Conrado García; Ingris Peláez-Ballestas; Graciela S Alarcón; Bernardo A Pons-Estel
Journal:  Clin Rheumatol       Date:  2018-04-19       Impact factor: 2.980

3.  Views of Mexican outpatients with rheumatoid arthritis on sexual and reproductive health: A cross-sectional study.

Authors:  Loraine Ledón-LLanes; Irazú Contreras-Yáñez; Guillermo Guaracha-Basáñez; Salvador Saúl Valverde-Hernández; Anayanci González-Marín; Ángel de Jesús Ballinas-Sánchez; Marta Durand; Virginia Pascual-Ramos
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4.  Markers of disease severity and positive family history are associated to significant risk perception in rheumatoid arthritis, while compliance with therapy is not: a cross-sectional study in 415 Mexican outpatients.

Authors:  Irazú Contreras-Yáñez; Pilar Lavielle; Patricia Clark; Virginia Pascual-Ramos
Journal:  Arthritis Res Ther       Date:  2021-02-22       Impact factor: 5.156

  4 in total

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