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Review

Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring?

by 1,2,* and 1,3
1
Division of Rheumatology, Department of Medicine Solna, Karolinska Institutet and Karolinska University Hospital, 171 76 Stockholm, Sweden
2
Department of Rheumatology, Faculty of Medicine and Health, Örebro University, 701 82 Örebro, Sweden
3
Division of Rheumatology, Department of Internal Medicine 3, Medical University of Vienna, 1090 Vienna, Austria
*
Author to whom correspondence should be addressed.
Academic Editor: Matteo Piga
J. Clin. Med. 2022, 11(2), 340; https://doi.org/10.3390/jcm11020340
Received: 26 December 2021 / Revised: 7 January 2022 / Accepted: 8 January 2022 / Published: 11 January 2022
(This article belongs to the Special Issue Systemic Lupus Erythematosus: Pathogenesis, Diagnosis and Treatment)
Systemic lupus erythematosus (SLE) is a chronic autoimmune disorder that has detrimental effects on patient’s health-related quality of life (HRQoL). Owing to its immense heterogeneity of symptoms and its complexity regarding comorbidity burden, management of SLE necessitates interdisciplinary care, with the goal being the best possible HRQoL and long-term outcomes. Current definitions of remission, low disease activity, and response to treatment do not incorporate self-reported patient evaluation, while it has been argued that the physician’s global assessment should capture the patient’s perspective. However, even the judgment of a very well-trained physician might not replace a patient-reported outcome measure (PROM), not only owing to the multidimensionality of self-perceived health experience but also since this notion would constitute a direct contradiction to the definition of PROMs. The proper use of PROMs is not only an important conceptual issue but also an opportunity to build bridges in the partnership between patients and physicians. These points of consideration adhere to the overall framework that there will seldom be one single best marker that helps interpret the activity, severity, and impact of SLE at the same time. For optimal outcomes, we not only stress the importance of the use of PROMs but also emphasize the urgency of adoption of the conception of forming alliances with patients and facilitating patient participation in surveillance and management processes. Nevertheless, this should not be misinterpreted as a transfer of responsibility from healthcare professionals to patients but rather a step towards shared decision-making. View Full-Text
Keywords: systemic lupus erythematosus; patient-reported outcomes; patient perspective; health-related quality of life; shared decision; person-centred care systemic lupus erythematosus; patient-reported outcomes; patient perspective; health-related quality of life; shared decision; person-centred care
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MDPI and ACS Style

Parodis, I.; Studenic, P. Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? J. Clin. Med. 2022, 11, 340. https://doi.org/10.3390/jcm11020340

AMA Style

Parodis I, Studenic P. Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? Journal of Clinical Medicine. 2022; 11(2):340. https://doi.org/10.3390/jcm11020340

Chicago/Turabian Style

Parodis, Ioannis, and Paul Studenic. 2022. "Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring?" Journal of Clinical Medicine 11, no. 2: 340. https://doi.org/10.3390/jcm11020340

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