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Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals

INTRODUCTION: This survey assessed the impact of rheumatoid arthritis (RA) on the lives of patients based on the perceptions of both patients and healthcare professionals (HCPs). METHODS: This is a cross-sectional survey of patients with RA. Data were collected from patients and HCPs who manage RA u...

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Autores principales: Alten, Rieke, van de Laar, Mart, De Leonardis, Francesco, Tietz, Nicole, Guerreiro, Mariana, van Vollenhoven, Ronald
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Healthcare 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6858420/
https://www.ncbi.nlm.nih.gov/pubmed/31659680
http://dx.doi.org/10.1007/s40744-019-00179-2
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author Alten, Rieke
van de Laar, Mart
De Leonardis, Francesco
Tietz, Nicole
Guerreiro, Mariana
van Vollenhoven, Ronald
author_facet Alten, Rieke
van de Laar, Mart
De Leonardis, Francesco
Tietz, Nicole
Guerreiro, Mariana
van Vollenhoven, Ronald
author_sort Alten, Rieke
collection PubMed
description INTRODUCTION: This survey assessed the impact of rheumatoid arthritis (RA) on the lives of patients based on the perceptions of both patients and healthcare professionals (HCPs). METHODS: This is a cross-sectional survey of patients with RA. Data were collected from patients and HCPs who manage RA using a structured, closed-ended questionnaire in their local language. Respondents for the survey were recruited from survey panels of verified unique responses. The survey focused on the impact of disease on four domains: daily activities, relationships, work and aspirations. RESULTS: Overall, 1231 adult patients with RA and 270 rheumatologists or other HCPs were surveyed between November 2016 and February 2017. Almost one in three patients believed that the impact of RA is not well understood by people without the disease. Fifty-eight percent [95% confidence interval (CI) 55–61%] of patients felt frustrated when they were unable to undertake or complete daily activities because of their disease. Fifty-seven percent (95% CI 54–60%) of patients wished to be able to accept their life with RA. Forty-three percent (95% CI 40–46%) of patients hoped that the physical impact of RA will be better understood in future. Forty percent (95% CI 37–43%) of patients were forced to take long-term leave/retirement or experienced slow career progression since being diagnosed with RA. Twenty-three percent (95% CI 21–25%) of patients had difficulties in taking care of personal grooming, whereas 8% (95% CI 6–10%) of patients reported that RA ruined their life. Similar responses were observed among HCPs. CONCLUSION: Patients and HCPs feel that the physical and emotional impact of RA is not well understood by people without the disease. In RA treatment decisions, patients’ personal goals and patient-reported outcomes should be taken into consideration along with clinical targets. FUNDING: Eli Lilly and Company (Indianapolis, IN, USA). ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s40744-019-00179-2) contains supplementary material, which is available to authorized users.
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spelling pubmed-68584202019-12-03 Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals Alten, Rieke van de Laar, Mart De Leonardis, Francesco Tietz, Nicole Guerreiro, Mariana van Vollenhoven, Ronald Rheumatol Ther Original Research INTRODUCTION: This survey assessed the impact of rheumatoid arthritis (RA) on the lives of patients based on the perceptions of both patients and healthcare professionals (HCPs). METHODS: This is a cross-sectional survey of patients with RA. Data were collected from patients and HCPs who manage RA using a structured, closed-ended questionnaire in their local language. Respondents for the survey were recruited from survey panels of verified unique responses. The survey focused on the impact of disease on four domains: daily activities, relationships, work and aspirations. RESULTS: Overall, 1231 adult patients with RA and 270 rheumatologists or other HCPs were surveyed between November 2016 and February 2017. Almost one in three patients believed that the impact of RA is not well understood by people without the disease. Fifty-eight percent [95% confidence interval (CI) 55–61%] of patients felt frustrated when they were unable to undertake or complete daily activities because of their disease. Fifty-seven percent (95% CI 54–60%) of patients wished to be able to accept their life with RA. Forty-three percent (95% CI 40–46%) of patients hoped that the physical impact of RA will be better understood in future. Forty percent (95% CI 37–43%) of patients were forced to take long-term leave/retirement or experienced slow career progression since being diagnosed with RA. Twenty-three percent (95% CI 21–25%) of patients had difficulties in taking care of personal grooming, whereas 8% (95% CI 6–10%) of patients reported that RA ruined their life. Similar responses were observed among HCPs. CONCLUSION: Patients and HCPs feel that the physical and emotional impact of RA is not well understood by people without the disease. In RA treatment decisions, patients’ personal goals and patient-reported outcomes should be taken into consideration along with clinical targets. FUNDING: Eli Lilly and Company (Indianapolis, IN, USA). ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s40744-019-00179-2) contains supplementary material, which is available to authorized users. Springer Healthcare 2019-10-28 /pmc/articles/PMC6858420/ /pubmed/31659680 http://dx.doi.org/10.1007/s40744-019-00179-2 Text en © The Author(s) 2019 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) ), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Research
Alten, Rieke
van de Laar, Mart
De Leonardis, Francesco
Tietz, Nicole
Guerreiro, Mariana
van Vollenhoven, Ronald
Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals
title Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals
title_full Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals
title_fullStr Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals
title_full_unstemmed Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals
title_short Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals
title_sort physical and emotional burden of rheumatoid arthritis: data from ra matters, a web-based survey of patients and healthcare professionals
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6858420/
https://www.ncbi.nlm.nih.gov/pubmed/31659680
http://dx.doi.org/10.1007/s40744-019-00179-2
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