@article{b67f44f7b8ab4f9882eb71047c347dcb,
title = "A multicenter nominal group study to rank outcomes important to patients, and their representation in existing composite outcome measures for psoriatic arthritis",
abstract = "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.",
keywords = "Outcome measures, Psoriasis, Psoriatic arthritis",
author = "{The PROMPT study group} and William Tillett and Emma Dures and Sarah Hewlett and Helliwell, {Philip S.} and Oliver FitzGerald and Melanie Brooke and Jana James and Jane Lord and Clive Bowen and {De Wit}, Martin and Orbai, {Ana Maria} and Neil McHugh",
note = "Funding Information: From the Royal National Hospital for Rheumatic Diseases; Department of Pharmacy and Pharmacology, University of Bath; PsAZZ Psoriatic Arthritis Support Group, Bath; University of the West of England, Bristol; Leeds Institute of Rheumatic and Musculoskeletal Medicine (LIRMM), University of Leeds, Leeds, UK; St. Vincent{\textquoteright}s University Hospital and the Conway Institute, University College Dublin (UCD), Dublin, Ireland; Department of Medical Humanities, Patient Research Partner, VU University Medical Centre, Amsterdam, the Netherlands; Division of Rheumatology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA. This report is from independent research funded by the National Institute for Health Research (Programme Grants for Applied Research, Early detection to improve outcome in patients with undiagnosed psoriatic arthritis, RP-PG-1212-20007). W. Tillett, MBChB PhD, Royal National Hospital for Rheumatic Diseases, and Department of Pharmacy and Pharmacology, University of Bath; E. Dures, MSc, PhD, University of the West of England; S. Hewlett, FRCN, PhD, MA, University of the West of England; P.S. Helliwell, MA, MD, LIRMM, University of Leeds; O. FitzGerald, MD, FRCPI, FRCP (UK), St. Vincent{\textquoteright}s University Hospital and the Conway Institute, UCD; M. Brooke, Patient Research Partner, Chair, PsAZZ Psoriatic Arthritis Support Group; J. James, Patient Research Partner; J. Lord, Patient Research Partner; C. Bowen, Patient Research Partner; M. de Wit, PhD, Department of Medical Humanities, Patient Research Partner, VU University Medical Centre; A. Orbai, MD, Division of Rheumatology, Johns Hopkins University School of Medicine; N. McHugh, MD, FRCP, FRCPath, Royal National Hospital for Rheumatic Diseases, and Department of Pharmacy and Pharmacology, University of Bath. Address correspondence to Dr. W. Tillett, Royal National Hospital for Rheumatic Diseases, Upper Borough Walls, Bath, BA11RL, UK. E-mail: w.tillett@nhs.net Accepted for publication May 18, 2017. Publisher Copyright: {\textcopyright} Copyright 2017 The Journal of Rheumatology. All rights reserved.",
year = "2017",
month = oct,
day = "1",
doi = "10.3899/jrheum.161459",
language = "English (US)",
volume = "44",
pages = "1445--1452",
journal = "Journal of Rheumatology",
issn = "0315-162X",
publisher = "Journal of Rheumatology",
number = "10",
}