Skip to main content
Top
Published in: The Patient - Patient-Centered Outcomes Research 4/2017

Open Access 01-08-2017 | Original Research Article

Important Treatment Outcomes for Patients with Psoriatic Arthritis: A Multisite Qualitative Study

Authors: Emma Dures, Sarah Hewlett, Jane Lord, Clive Bowen, Neil McHugh, William Tillett, For the PROMPT Study Group

Published in: The Patient - Patient-Centered Outcomes Research | Issue 4/2017

Login to get access

Abstract

Background

Psoriatic arthritis (PsA) is a variable and complex inflammatory condition. Symptoms can compromise physical function, reduce quality of life, and accrue significant health costs. Commonly used patient-reported outcomes largely reflect the professionals’ perspective, however it is not known whether they capture what is important to patients.

Objective

The aim of our study was to identify treatment outcomes important to patients with PsA.

Methods

Eight focus groups that were audio recorded, transcribed, anonymised and analysed using inductive thematic analysis were conducted at five hospital sites. The full data set was analysed by the lead researcher, and subsets analysed by three team members (including patient partners).

Results

Overall, 41 patients sampled for a range of phenotypes and domains of disease activity participated in the study: 20 males; mean age 58 years (range 28–75, standard deviation [SD] 11.4); mean disease duration 9 years (range 0.5–39, SD 8.3); and mean Health Assessment Questionnaire score of 1 (range 0.0–2.5, SD 0.7). Over 60 outcomes were identified and grouped into four themes: (i) symptom alleviation (e.g. pain, fatigue, itchy skin, swelling, and reducing variability); (ii) reduction of disease impact (e.g. tiredness and pain, mobility and dexterity, deteriorating physical fitness, negative emotional responses, and strained relationships and social interactions); (iii) improved prognosis (e.g. slowing down disease progression, maintaining independence, and enhancing quality of life); and (iv) minimisation of treatment harm and burden (e.g. nausea, long-term effects, and administration and monitoring of treatments).

Conclusions

Outcomes from treatments that are important to patients, which relate to impacts from PsA and its treatment that range beyond those outcomes commonly measured, were identified. These patient perspectives need to be considered when evaluating treatments.
Literature
1.
go back to reference Lee S, Mendelsohn A, Sarnes E. The burden of psoriatic arthritis: a literature review from a global health systems perspective. P T. 2010;35:680–9.PubMedPubMedCentral Lee S, Mendelsohn A, Sarnes E. The burden of psoriatic arthritis: a literature review from a global health systems perspective. P T. 2010;35:680–9.PubMedPubMedCentral
2.
go back to reference Tillett W, de-Vries C, McHugh NJ. Work disability in psoriatic arthritis: a systematic review. Rheumatology. 2012;51:275–83.CrossRef Tillett W, de-Vries C, McHugh NJ. Work disability in psoriatic arthritis: a systematic review. Rheumatology. 2012;51:275–83.CrossRef
3.
go back to reference Ogdie A, Langan S, Love T, et al. Prevalence and treatment patterns of psoriatic arthritis in the UK. Rheumatology. 2013;52:568–75.CrossRef Ogdie A, Langan S, Love T, et al. Prevalence and treatment patterns of psoriatic arthritis in the UK. Rheumatology. 2013;52:568–75.CrossRef
4.
go back to reference Ogdie A, Gelfand J. Clinical risk factors for the development of psoriatic arthritis among patients with psoriasis: a review of available evidence. Curr Rheumatol Rep. 2015;17:64.CrossRef Ogdie A, Gelfand J. Clinical risk factors for the development of psoriatic arthritis among patients with psoriasis: a review of available evidence. Curr Rheumatol Rep. 2015;17:64.CrossRef
5.
go back to reference Ramiro S, Smolen J, Landewe R, et al. Pharmacological treatment of psoriatic arthritis: a systematic literature review for the 2015 update of the EULAR recommendations for the management of psoriatic arthritis. Ann Rheum Dis. 2016;75:490–8.CrossRef Ramiro S, Smolen J, Landewe R, et al. Pharmacological treatment of psoriatic arthritis: a systematic literature review for the 2015 update of the EULAR recommendations for the management of psoriatic arthritis. Ann Rheum Dis. 2016;75:490–8.CrossRef
6.
go back to reference Smolen J, Braun J, Dougados M, et al. Treating spondyloarthritis, including ankylosing spondylitis and psoriatic arthritis, to target: recommendations of an international task force. Ann Rheum Dis. 2014;73:6–16.CrossRef Smolen J, Braun J, Dougados M, et al. Treating spondyloarthritis, including ankylosing spondylitis and psoriatic arthritis, to target: recommendations of an international task force. Ann Rheum Dis. 2014;73:6–16.CrossRef
7.
go back to reference Aletaha D. The many faces of psoriatic arthritis: a challenge to treatment to target? Rheumatologia. 2016;54:1–2. Aletaha D. The many faces of psoriatic arthritis: a challenge to treatment to target? Rheumatologia. 2016;54:1–2.
8.
go back to reference Tillett W, Adebajo A, Brooke M, et al. Patient involvement in outcome measures for psoriatic arthritis. Curr Rheumatol Rep. 2014;16:1–10.CrossRef Tillett W, Adebajo A, Brooke M, et al. Patient involvement in outcome measures for psoriatic arthritis. Curr Rheumatol Rep. 2014;16:1–10.CrossRef
9.
go back to reference Palominos P, Gaujoux-Viala C, Fautrel B, Dougados M, Gossec L. Clinical outcomes in psoriatic arthritis: a systematic literature review. Arthritis Care Res. 2012;64:397–406.CrossRef Palominos P, Gaujoux-Viala C, Fautrel B, Dougados M, Gossec L. Clinical outcomes in psoriatic arthritis: a systematic literature review. Arthritis Care Res. 2012;64:397–406.CrossRef
10.
go back to reference Coates L, Mumtaz A, Helliwell P, et al. Development of a disease severity and responder index for psoriatic arthritis (PsA): report of the OMERACT 10 PsA special interest group. J Rheumatol. 2011;38:1496–501.CrossRef Coates L, Mumtaz A, Helliwell P, et al. Development of a disease severity and responder index for psoriatic arthritis (PsA): report of the OMERACT 10 PsA special interest group. J Rheumatol. 2011;38:1496–501.CrossRef
11.
go back to reference Fitzpatrick R, Davey C, Buxton M, Jones D. Evaluating patient-based outcome measures for use in clinical trials: a review. Health Technol Assess. 1998;2(14):i–iv, 1–74. Fitzpatrick R, Davey C, Buxton M, Jones D. Evaluating patient-based outcome measures for use in clinical trials: a review. Health Technol Assess. 1998;2(14):i–iv, 1–74.
12.
go back to reference Tillett W, Eder L, Goel N, et al. Enhanced patient involvement and the need to revise the core set: report from the psoriatic arthritis working group at OMERACT 2014. J Rheumatol. 2015;42:198–203. Tillett W, Eder L, Goel N, et al. Enhanced patient involvement and the need to revise the core set: report from the psoriatic arthritis working group at OMERACT 2014. J Rheumatol. 2015;42:198–203.
13.
go back to reference De Wit M, Kirwan J, Tugwell P, et al. Successful stepwise development of patient research partnership: 14 years’ experience of actions and consequences in Outcome Measures in Rheumatology (OMERACT). Patient. Epub 5 Oct 2016. De Wit M, Kirwan J, Tugwell P, et al. Successful stepwise development of patient research partnership: 14 years’ experience of actions and consequences in Outcome Measures in Rheumatology (OMERACT). Patient. Epub 5 Oct 2016.
14.
go back to reference Gossec L, De Witt M, Kiltz U, et al. A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative. J Rheumatol. 2014;73:1012–9. Gossec L, De Witt M, Kiltz U, et al. A patient-derived and patient-reported outcome measure for assessing psoriatic arthritis: elaboration and preliminary validation of the Psoriatic Arthritis Impact of Disease (PsAID) questionnaire, a 13-country EULAR initiative. J Rheumatol. 2014;73:1012–9.
15.
go back to reference Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–57.CrossRef Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19:349–57.CrossRef
16.
go back to reference Krueger R, Casey M. Focus groups: a practical guide for applied research. 3rd ed. Thousand Oaks: Sage; 2000. Krueger R, Casey M. Focus groups: a practical guide for applied research. 3rd ed. Thousand Oaks: Sage; 2000.
17.
go back to reference Fries J, Spitz P, Kraines R, Holman H. Measurement of patient outcome in arthritis. Arthritis Rheum. 1980;23:137–45.CrossRef Fries J, Spitz P, Kraines R, Holman H. Measurement of patient outcome in arthritis. Arthritis Rheum. 1980;23:137–45.CrossRef
18.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.CrossRef
19.
go back to reference Bowen G. Naturalistic inquiry and the saturation concept: a research note. Qual Res. 2008;8:137–42.CrossRef Bowen G. Naturalistic inquiry and the saturation concept: a research note. Qual Res. 2008;8:137–42.CrossRef
20.
go back to reference Kalyoncu U, Ogdie A, Campbell W, et al. Systematic literature review of domains assessed in psoriatic arthritis to inform update of the psoriatic arthritis core domain set. RMD Open. 2016;2:e000217.CrossRef Kalyoncu U, Ogdie A, Campbell W, et al. Systematic literature review of domains assessed in psoriatic arthritis to inform update of the psoriatic arthritis core domain set. RMD Open. 2016;2:e000217.CrossRef
21.
go back to reference Hewlett S, Ambler N, Almeida C, et al. Self-management of fatigue in rheumatoid arthritis: a randomised controlled trial of group cognitive-behavioural therapy. Ann Rheum Dis. 2011;70:1060–7.CrossRef Hewlett S, Ambler N, Almeida C, et al. Self-management of fatigue in rheumatoid arthritis: a randomised controlled trial of group cognitive-behavioural therapy. Ann Rheum Dis. 2011;70:1060–7.CrossRef
22.
go back to reference Vangeli E, Bakhshi S, Baker A, et al. A systematic review of factors associated with non-adherence to treatment for immune-mediated inflammatory diseases. Adv Ther. 2015;32:983–1028.CrossRef Vangeli E, Bakhshi S, Baker A, et al. A systematic review of factors associated with non-adherence to treatment for immune-mediated inflammatory diseases. Adv Ther. 2015;32:983–1028.CrossRef
23.
go back to reference Betteridge N, Boehncke W, Bundy C, et al. Promoting patient-centred care in psoriatic arthritis: a multidisciplinary European perspective on improving the patient experience. J Eur Acad Dermatol Venereol. 2016;30:576–85.CrossRef Betteridge N, Boehncke W, Bundy C, et al. Promoting patient-centred care in psoriatic arthritis: a multidisciplinary European perspective on improving the patient experience. J Eur Acad Dermatol Venereol. 2016;30:576–85.CrossRef
24.
go back to reference Sanderson T, Hewlett S, Flurey C, et al. The impact triad (severity, importance, self-management) as a method of enhancing measurement of personal life impact of rheumatic diseases. J Rheumatol. 2011;38:191–4.CrossRef Sanderson T, Hewlett S, Flurey C, et al. The impact triad (severity, importance, self-management) as a method of enhancing measurement of personal life impact of rheumatic diseases. J Rheumatol. 2011;38:191–4.CrossRef
25.
go back to reference Nicklin J, Cramp F, Kirwan J, et al. Collaboration with patients in the design of patient-reported outcome measures: capturing the experience of fatigue in rheumatoid arthritis. Arthritis Care Res. 2010;62:1552–8.CrossRef Nicklin J, Cramp F, Kirwan J, et al. Collaboration with patients in the design of patient-reported outcome measures: capturing the experience of fatigue in rheumatoid arthritis. Arthritis Care Res. 2010;62:1552–8.CrossRef
26.
go back to reference Nicklin J, Cramp F, Kirwan J, et al. Measuring fatigue in rheumatoid arthritis: a cross-sectional study to evaluate the Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional questionnaire, visual analogue scales, and numerical rating scales. Arthritis Care Res. 2010;62:1559–68.CrossRef Nicklin J, Cramp F, Kirwan J, et al. Measuring fatigue in rheumatoid arthritis: a cross-sectional study to evaluate the Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional questionnaire, visual analogue scales, and numerical rating scales. Arthritis Care Res. 2010;62:1559–68.CrossRef
27.
go back to reference Orbai A-M, de Wit M, Mease P, et al. International patient and physician consensus on psoriatic arthritis outcomes for clinical trials. Ann Rheum Dis. Epub 9 Sep 2016. Orbai A-M, de Wit M, Mease P, et al. International patient and physician consensus on psoriatic arthritis outcomes for clinical trials. Ann Rheum Dis. Epub 9 Sep 2016.
Metadata
Title
Important Treatment Outcomes for Patients with Psoriatic Arthritis: A Multisite Qualitative Study
Authors
Emma Dures
Sarah Hewlett
Jane Lord
Clive Bowen
Neil McHugh
William Tillett
For the PROMPT Study Group
Publication date
01-08-2017
Publisher
Springer International Publishing
Published in
The Patient - Patient-Centered Outcomes Research / Issue 4/2017
Print ISSN: 1178-1653
Electronic ISSN: 1178-1661
DOI
https://doi.org/10.1007/s40271-017-0221-4

Other articles of this Issue 4/2017

The Patient - Patient-Centered Outcomes Research 4/2017 Go to the issue
Live Webinar | 27-06-2024 | 18:00 (CEST)

Keynote webinar | Spotlight on medication adherence

Live: Thursday 27th June 2024, 18:00-19:30 (CEST)

WHO estimates that half of all patients worldwide are non-adherent to their prescribed medication. The consequences of poor adherence can be catastrophic, on both the individual and population level.

Join our expert panel to discover why you need to understand the drivers of non-adherence in your patients, and how you can optimize medication adherence in your clinics to drastically improve patient outcomes.

Prof. Kevin Dolgin
Prof. Florian Limbourg
Prof. Anoop Chauhan
Developed by: Springer Medicine
Obesity Clinical Trial Summary

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.

Developed by: Springer Medicine