Remission in Rheumatoid Arthritis: Working Toward Incorporation of the Patient Perspective at OMERACT 12

Tuyl, Lilian H D van; Sadlonova, Martina; Davis, Bev; Flurey, Caroline; Goel, Niti; Hewlett, Sarah; Hill, Catherine; Hoogland, Wijnanda; Kirwan, John R.; Schaardenburg, Dirkjan van; Scholte-Voshaar, Marieke; Smolen, Josef S.; Stamm, Tanja; Wells, George A.; Boers, Maarten

doi:10.3899/jrheum.141113

Cited by 21 publications

(14 citation statements)

References 14 publications

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“…Although no guidance was offered regarding standardized language for explaining to patients what exact domains the PGA‐VAS is intended to capture, the ACR/European League Against Rheumatism remission criteria authors did attempt to alleviate some of this confusion by defining standard language and format for the question . Finally, no validated non‐English language or low‐literacy versions exist for the PGA‐VAS .…”

Section: Discussionmentioning

confidence: 99%

“…Patient feedback regarding PGA‐VAS has prompted suggestions for more investigation regarding the wording of the PGA‐VAS, anchoring, and the domains measured . Patients have also expressed an interest in greater understanding of how their mood influences the PGA‐VAS and the overlap between the PGA and other PROMs . These data were gathered, but from a small number of patients about whom complete sociodemographic data are not available.…”

Section: Discussionmentioning

confidence: 99%

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Limited Health Literacy and Patient Confusion About Rheumatoid Arthritis Patient Global Assessments and Model Disease States

Hirsh

Wood

Keniston

et al. 2019

Arthritis Care & Research

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Limited Health Literacy and Patient Confusion About Rheumatoid Arthritis Patient Global Assessments and Model Disease States

Hirsh

Wood

Keniston

et al. 2019

Arthritis Care & Research

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“…In addition, all patient representatives who attended OMERACT 12 in 2014 were invited to participate by email,26 as well as all the patients who participated in one of the nine focus group discussions prior to this study 23…”

Section: Methodsmentioning

confidence: 99%

The patient perspective on absence of disease activity in rheumatoid arthritis: a survey to identify key domains of patient-perceived remission

et al. 2016

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BackgroundGuidelines suggest treatment in rheumatoid arthritis (RA) to target remission, in close consultation with the patient. Our recent qualitative study of the patients' perspective on remission in RA identified 26 domains. The current study aimed to identify a short list of the most important aspects to inform future research.MethodsPatients with RA from the Netherlands, the UK, Austria, Denmark, France and the USA completed a survey that contained all domains identified in our qualitative study. They rated domains for importance (‘not important’, ‘important’ or ‘essential’ to characterise a period of remission) and if important or essential, whether this domain needs to be ‘less’, ‘almost gone’ or ‘gone’ to reflect remission. Respondents were also asked to determine their personal top 3 most important/essential domains. Frequency of specific domains in the top 3 was calculated, and domains were sorted on the percentage of patients that evaluated a particular domain as ‘essential’.ResultsOf 274 respondents, 75% were female, mean (SD) age 57(13) years, disease duration 12(9) years. The top 3 were as follows: pain (67%), fatigue (33%) and independence (19%); domains most frequently rated as ‘essential’ were as follows: pain (60%), being mobile (52%), physical function (51%), being independent (47%) and fatigue (41%). Pain needed to be less (13%), almost gone (42%) or gone (45%) to reflect remission. Similar patterns were seen for fatigue, independence, mobility and physical functioning.ConclusionPatients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission.

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“…Pain may be challenging to treat in inflammatory arthritides and has been emphasised as a core domain by the Outcome Measures in Rheumatology initiative (OMERACT) and the Group for Research and Assessment of Psoriasis and Psoriatic arthritis (GRAPPA) 1 2…”

Section: Introductionmentioning

confidence: 99%

Discordance between tender and swollen joint count as well as patient's and evaluator's global assessment may reduce likelihood of remission in patients with rheumatoid arthritis and psoriatic arthritis: data from the prospective multicentre NOR-DMARD study

et al. 2016

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Remission in Rheumatoid Arthritis: Working Toward Incorporation of the Patient Perspective at OMERACT 12

Abstract: Progress summarized over 4 years highlights the main methodological challenges discussed within the working group on patient perspective on remission in RA during OMERACT 12.

Cited by 21 publications

References 14 publications

Limited Health Literacy and Patient Confusion About Rheumatoid Arthritis Patient Global Assessments and Model Disease States

Limited Health Literacy and Patient Confusion About Rheumatoid Arthritis Patient Global Assessments and Model Disease States

The patient perspective on absence of disease activity in rheumatoid arthritis: a survey to identify key domains of patient-perceived remission

Discordance between tender and swollen joint count as well as patient's and evaluator's global assessment may reduce likelihood of remission in patients with rheumatoid arthritis and psoriatic arthritis: data from the prospective multicentre NOR-DMARD study

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