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

Abstract 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 mana...

Full description

Bibliographic Details
Main Authors: Rieke Alten, Mart van de Laar, Francesco De Leonardis, Nicole Tietz, Mariana Guerreiro, Ronald van Vollenhoven
Format: Article
Language:English
Published: Adis, Springer Healthcare 2019-10-01
Series:Rheumatology and Therapy
Subjects:
Online Access:http://link.springer.com/article/10.1007/s40744-019-00179-2
id doaj-a99b8d3c1d6745868619a8834fd2b227
record_format Article
spelling doaj-a99b8d3c1d6745868619a8834fd2b2272020-11-25T04:00:47ZengAdis, Springer HealthcareRheumatology and Therapy2198-65762198-65842019-10-016458759710.1007/s40744-019-00179-2Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare ProfessionalsRieke Alten0Mart van de Laar1Francesco De Leonardis2Nicole Tietz3Mariana Guerreiro4Ronald van Vollenhoven5Schlosspark-Klinik University MedicineArthritis Centre Twente, Medisch Spectrum TwenteEli Lilly and CompanyEli Lilly and CompanyEli Lilly and CompanyAmsterdam University Medical CentersAbstract 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).http://link.springer.com/article/10.1007/s40744-019-00179-2Burden of illnessHCPsPatientsPatient goalsQuality of lifeQuestionnaire
collection DOAJ
language English
format Article
sources DOAJ
author Rieke Alten
Mart van de Laar
Francesco De Leonardis
Nicole Tietz
Mariana Guerreiro
Ronald van Vollenhoven
spellingShingle Rieke Alten
Mart van de Laar
Francesco De Leonardis
Nicole Tietz
Mariana Guerreiro
Ronald van Vollenhoven
Physical and Emotional Burden of Rheumatoid Arthritis: Data from RA Matters, a Web-Based Survey of Patients and Healthcare Professionals
Rheumatology and Therapy
Burden of illness
HCPs
Patients
Patient goals
Quality of life
Questionnaire
author_facet Rieke Alten
Mart van de Laar
Francesco De Leonardis
Nicole Tietz
Mariana Guerreiro
Ronald van Vollenhoven
author_sort Rieke Alten
title 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_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_sort physical and emotional burden of rheumatoid arthritis: data from ra matters, a web-based survey of patients and healthcare professionals
publisher Adis, Springer Healthcare
series Rheumatology and Therapy
issn 2198-6576
2198-6584
publishDate 2019-10-01
description Abstract 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).
topic Burden of illness
HCPs
Patients
Patient goals
Quality of life
Questionnaire
url http://link.springer.com/article/10.1007/s40744-019-00179-2
work_keys_str_mv AT riekealten physicalandemotionalburdenofrheumatoidarthritisdatafromramattersawebbasedsurveyofpatientsandhealthcareprofessionals
AT martvandelaar physicalandemotionalburdenofrheumatoidarthritisdatafromramattersawebbasedsurveyofpatientsandhealthcareprofessionals
AT francescodeleonardis physicalandemotionalburdenofrheumatoidarthritisdatafromramattersawebbasedsurveyofpatientsandhealthcareprofessionals
AT nicoletietz physicalandemotionalburdenofrheumatoidarthritisdatafromramattersawebbasedsurveyofpatientsandhealthcareprofessionals
AT marianaguerreiro physicalandemotionalburdenofrheumatoidarthritisdatafromramattersawebbasedsurveyofpatientsandhealthcareprofessionals
AT ronaldvanvollenhoven physicalandemotionalburdenofrheumatoidarthritisdatafromramattersawebbasedsurveyofpatientsandhealthcareprofessionals
_version_ 1724449256537849856