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Study of Flare Assessment in Systemic Lupus Erythematosus Based on Paper Patients

Isenberg, D; Sturgess, J; Allen, E; Aranow, C; Askanase, A; Sang-Cheol, B; Bernatsky, S; ... Gordon, C; + view all (2018) Study of Flare Assessment in Systemic Lupus Erythematosus Based on Paper Patients. Arthritis Care and Research , 70 (1) pp. 98-103. 10.1002/acr.23252. Green open access

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Abstract

OBJECTIVE: To determine the level of agreement of disease flare severity (distinguishing severe, moderate and mild flare and persistent disease activity) in a large paper patient exercise involving 988 individual cases of systemic lupus erythematosus. METHODS: 988 individual lupus case histories were assessed by three individual physicians. Complete agreement about the degree of flare (or persistent disease activity) was obtained in 451 cases (46%) and these provided the reference standard for the second part of the study. This component utilised three flare activity instruments (BILAG 2004, SELENA flare index (SFI) and the revised SELENA flare index (rSFI)). The 451 patient case histories were distributed to 18 pairs of physicians being carefully randomised in a manner designed to ensure a fair case mix and equal distribution of flare according to severity. RESULTS: The three physician assessment of flare matched the level of flare using the three indices thus 67% for BILAG 2004, 72% for SFI and 70% for rSFI. The corresponding weighted kappas for each instrument were 0.82, 0.59 and 0.74 respectively. We undertook a detailed analysis of the discrepant cases and several factors emerged including a tendency to score moderate flares as severe and persistent activity as flare especially when the SFI and rSFI instruments were used. Overscoring was also driven by scoring treatment change as flare even if there were no new or worsening clinical features. CONCLUSIONS: Given the complexity of assessing lupus flare, we were encouraged by the overall results reported. However the problem of capturing lupus flare accurately is not completely solved.

Type: Article
Title: Study of Flare Assessment in Systemic Lupus Erythematosus Based on Paper Patients
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1002/acr.23252
Publisher version: http://doi.org/10.1002/acr.23252
Language: English
Additional information: Copyright © 2017, The Authors. Arthritis Care & Research published by Wiley Periodicals, Inc. on behalf of American College of Rheumatology. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Keywords: BILAG 2004, SELENA, flare, lupus
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Medicine > Inflammation
URI: https://discovery.ucl.ac.uk/id/eprint/1553677
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