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A multicenter nominal group study to rank outcomes important to patients, and their representation in existing composite outcome measures for psoriatic arthritis

Helliwell, Philip S.; Tillett, William; Dures, Emma; Hewlett, Sarah; FitzGerald, Oliver; Brooke, Melanie; James, Jana; Lord, Jane; Bowen, Clive; De Wit, Martin; Orbai, Ana Maria; McHugh, Neil

A multicenter nominal group study to rank outcomes important to patients, and their representation in existing composite outcome measures for psoriatic arthritis Thumbnail


Authors

Philip S. Helliwell

William Tillett

Emma Dures Emma2.Dures@uwe.ac.uk
Professor in Rheumatology and Self-management

Oliver FitzGerald

Melanie Brooke

Jana James

Jane Lord

Clive Bowen

Martin De Wit

Ana Maria Orbai

Neil McHugh



Abstract

© Copyright 2017 The Journal of Rheumatology. All rights reserved. Objective. To rank outcomes identified as important to patients with psoriatic arthritis (PsA) and examine their representation in existing composite measures. Methods. Seven nominal group technique (NGT) meetings took place at 4 hospital sites. Two sorting rounds were conducted to generate a shortlist of outcomes followed by a group discussion and final ranking. In the final ranking round, patients were given 15 points each and asked to rank their top 5 outcomes from the shortlist. The totals were summed across the 7 NGT groups and were presented as a percentage of the maximum possible priority score.Results. Thirty-one patients took part: 16 men and 15 women; the mean age was 54 years (range 24-77; SD 12.2), the mean disease duration was 10.3 years (range 1-40; SD 9.2), and mean Health Assessment Questionnaire was 1.15 (range 0-2.63; SD 0.7). The highest-ranked outcomes that patients wished to see from treatment were pain with 93 points (20.0%), fatigue 62 (13.3%), physical fitness 33 (7.1%), halting/slowing damage 32 (6.9%), and quality of life/well-being 29 (6.2%).Reviewing existing composite measures for PsA demonstrated that no single measure adequately identifies all these outcomes.Conclusion. Pain and fatigue were ranked as the outcomes most important to patients receiving treatment for PsA and are not well represented within existing composite measures. Future work will focus on validating composite measures modified to identify outcomes important to patients.

Citation

Helliwell, P. S., Tillett, W., Dures, E., Hewlett, S., FitzGerald, O., Brooke, M., …McHugh, N. (2017). A multicenter nominal group study to rank outcomes important to patients, and their representation in existing composite outcome measures for psoriatic arthritis. Journal of Rheumatology, 44(10), 1445-1452. https://doi.org/10.3899/jrheum.161459

Journal Article Type Article
Acceptance Date May 18, 2017
Publication Date Oct 1, 2017
Deposit Date May 4, 2017
Publicly Available Date Aug 31, 2018
Journal Journal of Rheumatology
Print ISSN 0315-162X
Electronic ISSN 1499-2752
Publisher Journal of Rheumatology
Peer Reviewed Peer Reviewed
Volume 44
Issue 10
Pages 1445-1452
DOI https://doi.org/10.3899/jrheum.161459
Public URL https://uwe-repository.worktribe.com/output/887530
Publisher URL https://doi.org/10.3899/jrheum.161459
Additional Information Additional Information : This is a pre-copy-editing, author-produced PDF of an article accepted for publication in The Journal of Rheumatology following peer review. The definitive publisher-authenticated version Tillett, W., Dures, E., Hewlett, S., Helliwell, P., FitzGerald, O., Brooke, M., James, J., Lord, J., Bowen, C., de Wit, M., Orbai, A. and McHugh, N. (2017) A multicentre nominal group study to rank outcomes important to patients and their representation in existing composite outcome measures for psoriatic arthritis. Journal of Rheumatology, 44 (10). ISSN 0315-162X is available online at: https://doi.org/10.3899/jrheum.161459.

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