Patients' Attitudes and Experiences of Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis and Spondyloarthritis:  A Qualitative Synthesis

Ayano Kelly; Kathleen Tymms; David J. Tunnicliffe; Daniel Sumpton; Chandima Perera; Kieran Fallon; Jonathan C. Craig; Walter P. Abhayaratna; Allison Tong

doi:10.1002/acr.23329

Patients' Attitudes and Experiences of Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis and Spondyloarthritis: A Qualitative Synthesis

Ayano Kelly, Kathleen Tymms, David J. Tunnicliffe, Daniel Sumpton, Chandima Perera, Kieran Fallon, Jonathan C. Craig, Walter P. Abhayaratna, Allison Tong

Research output: Contribution to journal › Article › peer-review

34 Citations (Scopus)

15 Downloads (Pure)

Abstract

Objective: Nonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondyloarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describe patients’ attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence.

Methods: Databases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesis was used to analyze the findings.

Results: From 56 studies involving 1,383 adult patients (RA [n = 1,149], SpA [n = 191], not specified [n = 43]), we identified 6 themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health, daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflicting and confusing advice, prognostic uncertainty with changing treatment regimens), powerful social influences (swayed by others’ experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuing peer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologic agent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing lifestyle intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line).

Conclusion: Patients perceive DMARDs as strong medications with alarming side effects that intensify their disease identity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectation that medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive environment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes.

Original language	English
Pages (from-to)	525-532
Number of pages	8
Journal	Arthritis Care & Research
Volume	70
Issue number	4
Early online date	21 Jul 2017
DOIs	https://doi.org/10.1002/acr.23329
Publication status	Published - Apr 2018
Externally published	Yes

Bibliographical note

This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

Keywords

disease-modifying antirheumatic drugs (DMARDS)
rheumatoid arthritis (RA)
spondy-loarthritis (SpA)

Access to Document

10.1002/acr.23329Licence: In Copyright

Published versionFinal published version, 528 KBLicence: CC BY

Cite this

@article{348cb029d6724ac5ad7de1e1a7b0f720,

title = "Patients' Attitudes and Experiences of Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis and Spondyloarthritis: A Qualitative Synthesis",

abstract = "Objective: Nonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondyloarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describe patients{\textquoteright} attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence. Methods: Databases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesis was used to analyze the findings. Results: From 56 studies involving 1,383 adult patients (RA [n = 1,149], SpA [n = 191], not specified [n = 43]), we identified 6 themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health, daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflicting and confusing advice, prognostic uncertainty with changing treatment regimens), powerful social influences (swayed by others{\textquoteright} experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuing peer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologic agent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing lifestyle intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line). Conclusion: Patients perceive DMARDs as strong medications with alarming side effects that intensify their disease identity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectation that medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive environment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes.",

keywords = "disease-modifying antirheumatic drugs (DMARDS), rheumatoid arthritis (RA), spondy-loarthritis (SpA)",

author = "Ayano Kelly and Kathleen Tymms and Tunnicliffe, {David J.} and Daniel Sumpton and Chandima Perera and Kieran Fallon and Craig, {Jonathan C.} and Abhayaratna, {Walter P.} and Allison Tong",

note = "This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.",

year = "2018",

month = apr,

doi = "10.1002/acr.23329",

language = "English",

volume = "70",

pages = "525--532",

journal = "Arthritis Care & Research",

issn = "2151-464X",

publisher = "Wiley-Liss Inc.",

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}

TY - JOUR

T1 - Patients' Attitudes and Experiences of Disease-Modifying Antirheumatic Drugs in Rheumatoid Arthritis and Spondyloarthritis

T2 - A Qualitative Synthesis

AU - Kelly, Ayano

AU - Tymms, Kathleen

AU - Tunnicliffe, David J.

AU - Sumpton, Daniel

AU - Perera, Chandima

AU - Fallon, Kieran

AU - Craig, Jonathan C.

AU - Abhayaratna, Walter P.

AU - Tong, Allison

N1 - This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

PY - 2018/4

Y1 - 2018/4

N2 - Objective: Nonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondyloarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describe patients’ attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence. Methods: Databases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesis was used to analyze the findings. Results: From 56 studies involving 1,383 adult patients (RA [n = 1,149], SpA [n = 191], not specified [n = 43]), we identified 6 themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health, daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflicting and confusing advice, prognostic uncertainty with changing treatment regimens), powerful social influences (swayed by others’ experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuing peer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologic agent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing lifestyle intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line). Conclusion: Patients perceive DMARDs as strong medications with alarming side effects that intensify their disease identity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectation that medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive environment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes.

AB - Objective: Nonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondyloarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describe patients’ attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence. Methods: Databases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesis was used to analyze the findings. Results: From 56 studies involving 1,383 adult patients (RA [n = 1,149], SpA [n = 191], not specified [n = 43]), we identified 6 themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health, daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflicting and confusing advice, prognostic uncertainty with changing treatment regimens), powerful social influences (swayed by others’ experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuing peer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologic agent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing lifestyle intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line). Conclusion: Patients perceive DMARDs as strong medications with alarming side effects that intensify their disease identity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectation that medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive environment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes.

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KW - spondy-loarthritis (SpA)

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U2 - 10.1002/acr.23329

DO - 10.1002/acr.23329

M3 - Article

SN - 2151-464X

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