Towards adaptive structuring of the lupologist’s consultation to transform the care pathway of systemic lupus erythematosus
Main Article Content
Abstract
Systemic lupus erythematosus (SLE) is a complex autoimmune disease, which can be clinically heterogeneous in the same patient over the disease process and has an unpredictable evolution. Although its prevalence is increasing, SLE remains a rare disease with frequent extra-articular manifestations managed by multiple specialists. Among these, the internist is a key player in the overall coordination of the care pathway. The dramatic improvement in the short-term prognosis of SLE observed over the past few decades has favoured the emergence of more chronic disease-associated morbidities, especially infectious, cardiovascular and/or related to sequelae, notably renal. Thus, every lupologist is confronted with the difficulty of having to address, in an educational, individualised but also systematic way, a certain number of key items on which the short-, medium- and long-term medical future of patients who develop SLE at a relatively young age depend. In recent years, in addition to the creation of a network of reference centres and the drafting of regularly updated national therapeutic guidelines and therapeutic education programs, international consensus about the factors to consider in SLE patients has been reached, including the definition of therapeutic objectives according to a treat-to-target (T2T) strategy. However, the translation of these new objectives/paradigms in real-life has encountered a number of difficulties. As part of a multidisciplinary team involving SLE patients, we developed practical tools in the form of CHECKLISTs addressing the problems of refractory SLE (D2T), the management of comorbidities and toxicities (BASICs), and, more recently, therapeutic de-escalation with a shared medical decision (T2U). It appears that there is an opportunity to transform the care pathway of SLE patients by allowing the implementation of these tools within adaptive structuring of the consultation, which has the advantage of defining a starting point within the care pathway as a common denominator for lupologists, regardless of their specialty or where they work.
Keywords:
Systemic Lupus Erythematosus, Adaptive Structuring of the Lupologist’s Consultation, Lupologist’s Consultation to Transform the Care Pathway of Systemic Lupus Erythematosus
Article Details
How to Cite
CHICHE, Laurent et al.
Towards adaptive structuring of the lupologist’s consultation to transform the care pathway of systemic lupus erythematosus.
Medical Research Archives, [S.l.], v. 11, n. 3, mar. 2023.
ISSN 2375-1924.
Available at: <https://esmed.org/MRA/mra/article/view/3679>. Date accessed: 04 dec. 2024.
doi: https://doi.org/10.18103/mra.v11i3.3679.
Section
Research Articles
The Medical Research Archives grants authors the right to publish and reproduce the unrevised contribution in whole or in part at any time and in any form for any scholarly non-commercial purpose with the condition that all publications of the contribution include a full citation to the journal as published by the Medical Research Archives.
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[8] van Vollenhoven RF, Bertsias G, Doria A, et al. 2021 DORIS definition of remission in SLE: final recommendations from an international task force. Lupus Sci Med. 2021 Nov;8(1):e000538. doi: 10.1136/lupus-2021-000538.
[9] Kandane-Rathnayake R, Golder V, Louthrenoo W, et al. Development of the Asia Pacific Lupus Collaboration cohort. Int J Rheum Dis. 2019 Mar;22(3):425-433. doi: 10.1111/1756-185X.13431.
[10] Chiche L, Jousse-Joulin S, Jourde-Chiche N. Envisager la désescalade thérapeutique au cours du Lupus Erythémateux Systémique : du concept de T2T à celui de T2U [From "Treat to Target" to "Think to Untreat": Therapeutic de-implementation as a new paradigm in systemic lupus erythematosus]. Rev Med Interne. 2022 Dec 22:S0248-8663(22)01155-9. French. doi: 10.1016/j.revmed.2022.12.001.
[11] https://www.has-sante.fr/upload/docs/application/pdf/2017-03/dir1/pnds_-_lupus_systemique.pdf
[12] Floris A, Chessa E, Sebastiani GD, et al. Glucocorticoid tapering and associated outcome in patients with newly diagnosed systemic lupus erythematosus: the real-world GULP prospective observational study. RMD Open. 2022 Dec;8(2):e002701. doi: 10.1136/rmdopen-2022-002701.
[13] Tai S, Anumolu N, Putman M. Challenging wisely: how to move beyond '1 mg/kg then taper'. Rheumatology (Oxford). 2022 Dec 23;62(1):3-6. doi: 10.1093/rheumatology/keac221.
[14] Aranow C, Atish-Fregoso Y, Lesser M, et al. Transcutaneous auricular vagus nerve stimulation reduces pain and fatigue in patients with systemic lupus erythematosus: a randomised, double-blind, sham-controlled pilot trial. Ann Rheum Dis. 2021 Feb;80(2):203-208. doi: 10.1136/annrheumdis-2020-217872.
[15] Banchereau R, Hong S, Cantarel B, et al. Personalized Immunomonitoring Uncovers Molecular Networks that Stratify Lupus Patients. Cell. 2016 Apr 21;165(3):551-65. doi: 10.1016/j.cell.2016.03.008.
[16] Jourde-Chiche N, Whalen E, Gondouin B, et al. Modular transcriptional repertoire analyses identify a blood neutrophil signature as a candidate biomarker for lupus nephritis. Rheumatology (Oxford). 2017 Mar 1;56(3):477-487. doi: 10.1093/rheumatology/kew439.
[17] Nocturne G, Mariette X. Interferon signature in systemic autoimmune diseases: what does it mean? RMD Open. 2022 Dec;8(2):e002687. doi: 10.1136/rmdopen-2022-002687.
[18] Rangi Kandane-Rathnayake, et al. Lupus low disease activity state and remission and risk of mortality in patients with systemic lupus erythematosus: a prospective, multinational, longitudinal cohort study. DOI: https://doi.org/10.1016/S2665-9913(22)00304-6
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