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Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring?
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,...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8778558/ https://www.ncbi.nlm.nih.gov/pubmed/35054036 http://dx.doi.org/10.3390/jcm11020340 |
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author | Parodis, Ioannis Studenic, Paul |
author_facet | Parodis, Ioannis Studenic, Paul |
author_sort | Parodis, Ioannis |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-8778558 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-87785582022-01-22 Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? Parodis, Ioannis Studenic, Paul J Clin Med Review 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. MDPI 2022-01-11 /pmc/articles/PMC8778558/ /pubmed/35054036 http://dx.doi.org/10.3390/jcm11020340 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Review Parodis, Ioannis Studenic, Paul Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? |
title | Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? |
title_full | Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? |
title_fullStr | Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? |
title_full_unstemmed | Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? |
title_short | Patient-Reported Outcomes in Systemic Lupus Erythematosus. Can Lupus Patients Take the Driver’s Seat in Their Disease Monitoring? |
title_sort | patient-reported outcomes in systemic lupus erythematosus. can lupus patients take the driver’s seat in their disease monitoring? |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8778558/ https://www.ncbi.nlm.nih.gov/pubmed/35054036 http://dx.doi.org/10.3390/jcm11020340 |
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