TY - JOUR
T1 - Educational website incorporating rheumatoid arthritis patient needs for Latin American and Caribbean countries
AU - Massone, Francisca
AU - Martínez, María Eugenia
AU - Pascual-Ramos, Virginia
AU - Quintana, Rosana
AU - Stange, Lilith
AU - Caballero-Uribe, Carlo V.
AU - Ferreyra-Garrot, Leandro
AU - Kourilovitch, María
AU - Duarte, Margarita
AU - Baumert, Carlos
AU - Vergara, Cristián
AU - Gareca, Néstor
AU - Rodríguez, Cecilia
AU - Khoury, Vianna
AU - Medina, Mariela
AU - Cardiel, Mario H.
AU - Massardo, Loreto
N1 - Publisher Copyright:
© 2017, International League of Associations for Rheumatology (ILAR).
PY - 2017/12/1
Y1 - 2017/12/1
N2 - 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.
AB - 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.
KW - Patient education
KW - Patient needs
KW - Rheumatoid arthritis
KW - Website
UR - http://www.scopus.com/inward/record.url?scp=85032968996&partnerID=8YFLogxK
U2 - 10.1007/s10067-017-3866-4
DO - 10.1007/s10067-017-3866-4
M3 - Article
C2 - 29098475
AN - SCOPUS:85032968996
SN - 0770-3198
VL - 36
SP - 2789
EP - 2797
JO - Clinical Rheumatology
JF - Clinical Rheumatology
IS - 12
ER -