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

Lilian H D van Tuyl; Martina Sadlonova; Sarah Hewlett; Bev Davis; Caroline Flurey; Niti Goel; Laure Gossec; Cecilie Heegaard Brahe; Catherine L Hill; Wijnanda Hoogland; John Kirwan; Merete L Hetland; Dirkjan van Schaardenburg; Josef S Smolen; Tanja Stamm; Marieke Voshaar; George A Wells; Maarten Boers

doi:10.1136/annrheumdis-2016-209835

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

Lilian H D van Tuyl, Martina Sadlonova, Sarah Hewlett, Bev Davis, Caroline Flurey, Niti Goel, Laure Gossec, Cecilie Heegaard Brahe, Catherine L Hill, Wijnanda Hoogland, John Kirwan, Merete L Hetland, Dirkjan van Schaardenburg, Josef S Smolen, Tanja Stamm, Marieke Voshaar, George A Wells, Maarten Boers

Department of Clinical Medicine

34 Citations (Scopus)

Abstract

BACKGROUND: Guidelines 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.

METHODS: Patients 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'.

RESULTS: Of 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.

CONCLUSION: Patients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission.

Original language	English
Journal	Annals of the Rheumatic Diseases
Volume	76
Issue number	5
Pages (from-to)	855-861
ISSN	0003-4967
DOIs	https://doi.org/10.1136/annrheumdis-2016-209835
Publication status	Published - 1 May 2017

Keywords

Activities of Daily Living
Adult
Aged
Arthritis, Rheumatoid/drug therapy
Attitude to Health
Diagnostic Self Evaluation
Fatigue/etiology
Female
Humans
Male
Middle Aged
Pain/etiology
Patient Outcome Assessment
Qualitative Research
Remission Induction
Severity of Illness Index
Surveys and Questionnaires

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10.1136/annrheumdis-2016-209835

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van Tuyl, L. H. D., Sadlonova, M., Hewlett, S., Davis, B., Flurey, C., Goel, N., Gossec, L., Heegaard Brahe, C., Hill, C. L., Hoogland, W., Kirwan, J., Hetland, M. L., van Schaardenburg, D., Smolen, J. S., Stamm, T., Voshaar, M., Wells, G. A., & Boers, M. (2017). The patient perspective on absence of disease activity in rheumatoid arthritis: a survey to identify key domains of patient-perceived remission. Annals of the Rheumatic Diseases, 76(5), 855-861. https://doi.org/10.1136/annrheumdis-2016-209835

The patient perspective on absence of disease activity in rheumatoid arthritis : a survey to identify key domains of patient-perceived remission. / van Tuyl, Lilian H D; Sadlonova, Martina; Hewlett, Sarah et al.

In: Annals of the Rheumatic Diseases, Vol. 76, No. 5, 01.05.2017, p. 855-861.

Research output: Contribution to journal › Journal article › Research › peer-review

van Tuyl, LHD, Sadlonova, M, Hewlett, S, Davis, B, Flurey, C, Goel, N, Gossec, L, Heegaard Brahe, C, Hill, CL, Hoogland, W, Kirwan, J, Hetland, ML, van Schaardenburg, D, Smolen, JS, Stamm, T, Voshaar, M, Wells, GA & Boers, M 2017, 'The patient perspective on absence of disease activity in rheumatoid arthritis: a survey to identify key domains of patient-perceived remission', Annals of the Rheumatic Diseases, vol. 76, no. 5, pp. 855-861. https://doi.org/10.1136/annrheumdis-2016-209835

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abstract = "BACKGROUND: Guidelines 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.METHODS: Patients 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'.RESULTS: Of 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.CONCLUSION: Patients 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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author = "{van Tuyl}, {Lilian H D} and Martina Sadlonova and Sarah Hewlett and Bev Davis and Caroline Flurey and Niti Goel and Laure Gossec and {Heegaard Brahe}, Cecilie and Hill, {Catherine L} and Wijnanda Hoogland and John Kirwan and Hetland, {Merete L} and {van Schaardenburg}, Dirkjan and Smolen, {Josef S} and Tanja Stamm and Marieke Voshaar and Wells, {George A} and Maarten Boers",

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doi = "10.1136/annrheumdis-2016-209835",

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T1 - The patient perspective on absence of disease activity in rheumatoid arthritis

T2 - a survey to identify key domains of patient-perceived remission

AU - van Tuyl, Lilian H D

AU - Sadlonova, Martina

AU - Hewlett, Sarah

AU - Davis, Bev

AU - Flurey, Caroline

AU - Goel, Niti

AU - Gossec, Laure

AU - Heegaard Brahe, Cecilie

AU - Hill, Catherine L

AU - Hoogland, Wijnanda

AU - Kirwan, John

AU - Hetland, Merete L

AU - van Schaardenburg, Dirkjan

AU - Smolen, Josef S

AU - Stamm, Tanja

AU - Voshaar, Marieke

AU - Wells, George A

AU - Boers, Maarten

N1 - Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

PY - 2017/5/1

Y1 - 2017/5/1

N2 - BACKGROUND: Guidelines 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.METHODS: Patients 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'.RESULTS: Of 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.CONCLUSION: Patients identified pain, fatigue and independence as the most important domains of RA disease activity that need to be improved to reflect remission.

AB - BACKGROUND: Guidelines 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.METHODS: Patients 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'.RESULTS: Of 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.CONCLUSION: Patients 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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KW - Aged

KW - Arthritis, Rheumatoid/drug therapy

KW - Attitude to Health

KW - Diagnostic Self Evaluation

KW - Fatigue/etiology

KW - Female

KW - Humans

KW - Male

KW - Middle Aged

KW - Pain/etiology

KW - Patient Outcome Assessment

KW - Qualitative Research

KW - Remission Induction

KW - Severity of Illness Index

KW - Surveys and Questionnaires

U2 - 10.1136/annrheumdis-2016-209835

DO - 10.1136/annrheumdis-2016-209835

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C2 - 27903508

SN - 0003-4967

VL - 76

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JO - Annals of the Rheumatic Diseases

JF - Annals of the Rheumatic Diseases

IS - 5

ER -

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

Abstract

Keywords

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