Holistic approaches in systemic lupus erythematosus: do physicians avoid addressing difficult-to-treat but highly relevant symptoms?

Despite advancements in the management of systemic lupus erythematosus (SLE), patients experience poor health-related quality of life (hrQoL) and premature death due to disease severity and treatment side effects. Achieving remission offers substantial benefits, including improved hrQoL and reduced...

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Main Authors: Vibeke Strand, Christopher Sjöwall, Chris Wincup, Ioannis Parodis, Zahi Touma, Jeanette Andersen
Format: Article
Language:English
Published: BMJ Publishing Group 2025-03-01
Series:RMD Open
Online Access:https://rmdopen.bmj.com/content/11/1/e005400.full
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author Vibeke Strand
Christopher Sjöwall
Chris Wincup
Ioannis Parodis
Zahi Touma
Jeanette Andersen
author_facet Vibeke Strand
Christopher Sjöwall
Chris Wincup
Ioannis Parodis
Zahi Touma
Jeanette Andersen
author_sort Vibeke Strand
collection DOAJ
description Despite advancements in the management of systemic lupus erythematosus (SLE), patients experience poor health-related quality of life (hrQoL) and premature death due to disease severity and treatment side effects. Achieving remission offers substantial benefits, including improved hrQoL and reduced mortality, yet the complexity of SLE, with its diverse underlying immune mechanisms and clinical manifestations, hampers progress. Involvement of the central nervous system with symptoms like fatigue, pain and brain fog often goes unaddressed due to limited evidence-based guidance and measurement tools. This neglect reflects gaps in training, discomfort in addressing untreatable symptoms and an overemphasis on evidence-based medicine, compromising holistic care. Recognising patient-reported outcomes has shifted SLE care towards a more patient-centred model, addressing hrQoL and aligning treatment goals. Embracing this approach and prioritising symptom management, even when a definitive cure is lacking, ensures compassionate, comprehensive care that improves adherence, satisfaction and the overall lived experience of patients with SLE.
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spelling doaj-art-7982dda807694458ba89ca72c6dfd2592025-08-20T02:46:52ZengBMJ Publishing GroupRMD Open2056-59332025-03-0111110.1136/rmdopen-2024-005400Holistic approaches in systemic lupus erythematosus: do physicians avoid addressing difficult-to-treat but highly relevant symptoms?Vibeke Strand0Christopher Sjöwall1Chris Wincup2Ioannis Parodis3Zahi Touma4Jeanette Andersen5Division of Immunology/Rheumatology, Stanford University, Stanford, California, USADepartment of Biomedical and Clinical Sciences, Division of Inflammation and Infection/Rheumatology, Linköpings universitet, Linköping, SwedenKing`s College London, London, UKDivision of Rheumatology, Department of Medicine Solna, Karolinska Institutet, Karolinska University Hospital, and Center for Molecular Medicine (CMM), Stockholm, SwedenDepartment of Medicine, University of Toronto, Toronto, Ontario, CanadaLupus Europe, Brussels, BelgiumDespite advancements in the management of systemic lupus erythematosus (SLE), patients experience poor health-related quality of life (hrQoL) and premature death due to disease severity and treatment side effects. Achieving remission offers substantial benefits, including improved hrQoL and reduced mortality, yet the complexity of SLE, with its diverse underlying immune mechanisms and clinical manifestations, hampers progress. Involvement of the central nervous system with symptoms like fatigue, pain and brain fog often goes unaddressed due to limited evidence-based guidance and measurement tools. This neglect reflects gaps in training, discomfort in addressing untreatable symptoms and an overemphasis on evidence-based medicine, compromising holistic care. Recognising patient-reported outcomes has shifted SLE care towards a more patient-centred model, addressing hrQoL and aligning treatment goals. Embracing this approach and prioritising symptom management, even when a definitive cure is lacking, ensures compassionate, comprehensive care that improves adherence, satisfaction and the overall lived experience of patients with SLE.https://rmdopen.bmj.com/content/11/1/e005400.full
spellingShingle Vibeke Strand
Christopher Sjöwall
Chris Wincup
Ioannis Parodis
Zahi Touma
Jeanette Andersen
Holistic approaches in systemic lupus erythematosus: do physicians avoid addressing difficult-to-treat but highly relevant symptoms?
RMD Open
title Holistic approaches in systemic lupus erythematosus: do physicians avoid addressing difficult-to-treat but highly relevant symptoms?
title_full Holistic approaches in systemic lupus erythematosus: do physicians avoid addressing difficult-to-treat but highly relevant symptoms?
title_fullStr Holistic approaches in systemic lupus erythematosus: do physicians avoid addressing difficult-to-treat but highly relevant symptoms?
title_full_unstemmed Holistic approaches in systemic lupus erythematosus: do physicians avoid addressing difficult-to-treat but highly relevant symptoms?
title_short Holistic approaches in systemic lupus erythematosus: do physicians avoid addressing difficult-to-treat but highly relevant symptoms?
title_sort holistic approaches in systemic lupus erythematosus do physicians avoid addressing difficult to treat but highly relevant symptoms
url https://rmdopen.bmj.com/content/11/1/e005400.full
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