Discrepant Perception of Lupus Disease Activity A Comparison between Patients' and Physicians' Disease Activity Scores

Claudia Elera-Fitzcarrald, Karen Vega, Rocío V. Gamboa-Cárdenas, Katiuska Zúñiga, Mariela Medina, Victor Pimentel-Quiroz, César Pastor-Asurza, Risto Perich-Campos, Zoila Rodríguez Bellido, Russell Griffin, Cynthia Aranow, Graciela S. Alarcón, Armando Calvo, Manuel F. Ugarte-Gil

Research output: Contribution to journalArticlepeer-review

11 Scopus citations


Objective: The aim of this studywas to compare patient and physician (MD) assessment of disease activity in systemic lupus erythematosus patients. Methods: This cross-sectional study was conducted between August 2016 and December 2017 at 2 Peruvian hospitals. One group assessed disease activity using a visual analog scale (VAS, 0-100 mm) and the other one using a numerical rating scale (NRS, 0-4), before and after their MD's visit. MDs assessed it with the Mexican Systemic Lupus Erythematosus Disease Activity (Mex-SLEDAI) (0-32) and with the SLICC/ACR Damage Index (SDI) for damage. Health-related quality of life was ascertained with the LupusQoL.Visual analog scale andNRSwere compared using the Wilcoxon signed-rank test and the correlation between disease activity as assessed by the patient and the Mex-SLEDAI, SDI, and LupusQoL with the Spearman rank correlation. Results: Two hundred forty patients were included; mean (SD) age at diagnosis was 34.9 (12.9) years; most patients were Mestizo. Disease duration was 10.1 (7.0) years. The Mex-SLEDAI was 1.9 (2.7) and the SDI 1.2 (1.5). Disease activity as assessed by the patient, either by VAS or NRS, did not correlate with the Mex-SLEDAI or the SDI. In contrast, patient assessment of disease activity, by VAS or NRS, significantly correlated with several components of the LupusQoL (physical health, pain, planning, emotional health, and fatigue). Conclusions: Physician's and patient's assessments of disease activity are discrepant; overall, patients score higher than their MDs. Patients score how they perceive the disease is affecting them, rather than disease activity per se. The VAS could be more useful than the NRS as a measurement of disease activity.

Original languageEnglish
Pages (from-to)S165-S169
JournalJournal of Clinical Rheumatology
Issue number7 S
StatePublished - 2021

Bibliographical note

Funding Information:
From the *Servicio de Reumatología, Hospital Guillermo Almenara Irigoyen, EsSalud; †Facultad de Medicina Universidad Científica del Sur; ‡Servicio de Inmunología y Reumatología, Hospital Nacional Cayetano Heredia; §Facultad de Medicina, Universidad Peruana Cayetano Heredia, Lima; ||School of Medicine, The University of Alabama, Birmingham, AL; and ¶Feinstein Institute for Medical Research, Manhasset, NY. The authors declare no conflicts of interest. This work was partially supported by an institutional grant from EsSalud (1483-GCGP-ESSALUD-2013, 1733-GCGP-ESSALUD-2014, and the 2015 Kaelin Prize) and one from the Pan American League of Associations for Rheumatology (2015 PANLAR Prize). Correspondence: Claudia Elera-Fitzcarrald, MD, Rheumatology Department, Hospital Guillermo Almenara Irigoyen, EsSalud, Av. Grau 800, La Victoria, Lima 13, Perú. E‐mail: claudiaelerafitz@gmail.com. Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved. ISSN: 1076-1608 DOI: 10.1097/RHU.0000000000001267

Publisher Copyright:
© 2019 Wolters Kluwer Health, Inc.


  • HRQoL
  • damage
  • disease activity
  • patient-reported outcome
  • systemic lupus erythematosus


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