Towards adaptive structuring of the lupologist’s consultation to transform the care pathway of systemic lupus erythematosus

Main Article Content

Laurent Chiche Guillemette Thomas Noémie Jourde-Chiche Thomas Escoda

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: 08 may 2024. doi: https://doi.org/10.18103/mra.v11i3.3679.
Section
Research Articles

References

[1] Taheri N, Mageau A, Chauveheid MP, et al. Impact of adherence to EULAR quality indicators on the quality of life of patients with systemic lupus erythematosus. Eur J Intern Med. 2022 Dec 28:S0953-6205(22)00449-6. doi: 10.1016/j.ejim.2022.12.019.
[2] Thomas G, Mancini J, Jourde-Chiche N, et al. Mortality associated with systemic lupus erythematosus in France assessed by multiple-cause-of-death analysis. Arthritis Rheumatol. 2014 Sep;66(9):2503-11. doi: 10.1002/art.38731.
[3] Boers M, Hartman L, Opris-Belinski D, et al. Low dose, add-on prednisolone in patients with rheumatoid arthritis aged 65+: the pragmatic randomised, double-blind placebo-controlled GLORIA trial. Ann Rheum Dis. 2022 Jul;81(7):925-936. doi: 10.1136/annrheumdis-2021-221957.
[4] Chiche L, Jourde N, Thomas G, et al. New treatment options for lupus - a focus on belimumab. Ther Clin Risk Manag. 2012;8:33-43. doi: 10.2147/TCRM.S19819.
[5] Felten R, Scherlinger M, Mertz P, Chasset F, Arnaud L. New biologics and targeted therapies in systemic lupus: from new molecular targets to new indications. A systematic review. Joint Bone Spine. 2023 Jan 6:105523. doi: 10.1016/j.jbspin.2023.105523.
[6] Grigor C, Capell H, Stirling A, et al. Effect of a treatment strategy of tight control for rheumatoid arthritis (the TICORA study): a single-blind randomised controlled trial. Lancet. 2004 Jul 17-23;364(9430):263-9. doi: 10.1016/S0140-6736(04)16676-2.
[7] Gatto M, Zen M, Iaccarino L, Doria A. New therapeutic strategies in systemic lupus erythematosus management. Nat Rev Rheumatol. 2019 Jan;15(1):30-48. doi: 10.1038/s41584-018-0133-2.
[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
[19] Ugarte-Gil MF, Hanly J, Urowitz M, et al. Remission and low disease activity (LDA) prevent damage accrual in patients with systemic lupus erythematosus: results from the Systemic Lupus International Collaborating Clinics (SLICC) inception cohort. Ann Rheum Dis. 2022 Aug 9:annrheumdis-2022-222487. doi: 10.1136/ard-2022-222487.
[20] Mertz P, Piga M, Chessa E, et al. Fatigue is independently associated with disease activity assessed using the Physician Global Assessment but not the SLEDAI in patients with systemic lupus erythematosus. RMD Open. 2022 Sep;8(2):e002395. doi: 10.1136/rmdopen-2022-002395.
[21] Assunção H, Jesus D, Larosa M, et al. Definition of low disease activity state based on the SLE-DAS: derivation and validation in a multicentre real-life cohort. Rheumatology (Oxford). 2022 Aug 3;61(8):3309-3316. doi: 10.1093/rheumatology/keab895.
[22] Banjari M, Touma Z, Gladman DD. Improving measures of disease activity in systemic lupus erythematosus. Expert Rev Clin Immunol. 2022 Dec 14:1-10. doi: 10.1080/1744666X.2023.2156339.
[23] Nagy G, Roodenrijs NMT, Welsing PMJ, et al. EULAR points to consider for the management of difficult-to-treat rheumatoid arthritis. Ann Rheum Dis. 2022 Jan;81(1):20-33. doi: 10.1136/annrheumdis-2021-220973.
[24] Garg S, Unnithan R, Hansen KE, Costedoat-Chalumeau N, Bartels CM. Clinical Significance of Monitoring Hydroxychloroquine Levels in Patients With Systemic Lupus Erythematosus: A Systematic Review and Meta-Analysis. Arthritis Care Res (Hoboken). 2021 May;73(5):707-716. doi: 10.1002/acr.24155.
[25] Mougiakakos D, Krönke G, Völkl S, et al. CD19-Targeted CAR T Cells in Refractory Systemic Lupus Erythematosus. N Engl J Med. 2021 Aug 5;385(6):567-569. doi: 10.1056/NEJMc2107725.
[26] Wincup C, Dunn N, Ruetsch-Chelli C, et al. Anti-rituximab antibodies demonstrate neutralising capacity, associate with lower circulating drug levels and earlier relapse in lupus. Rheumatology (Oxford). 2022 Nov 12:keac608. doi: 10.1093/rheumatology/keac608.
[27] Reddy VR, Pepper RJ, Shah K, et al. Disparity in peripheral and renal B-cell depletion with rituximab in systemic lupus erythematosus: an opportunity for obinutuzumab? Rheumatology (Oxford). 2022 Jul 6;61(7):2894-2904. doi: 10.1093/rheumatology/keab827.
[28] Escoda T, Jourde-Chiche N, Cornec D, Chiche L. Vers une meilleure stratification clinique dans les pathologies auto-immunes pour améliorer la prise en charge du patient dans ses dimensions bio-psycho-sociales [Toward a better clinical stratification of patients with autoimmune diseases to improve research and care within its biopsychosocial dimensions]. Rev Med Interne. 2022 Feb;43(2):71-74. French. doi: 10.1016/j.revmed.2021.10.337.
[29] Bobot M, Jourde-Chiche N. Lupus nephritis: Is it necessary to systematically repeat kidney biopsy? Rev Med Interne. 2022 Nov 21:S0248-8663(22)01124-9. doi: 10.1016/j.revmed.2022.11.002.
[30] Wattiaux A, Bettendorf B, Block L, et al. Patient Perspectives on Smoking Cessation and Interventions in Rheumatology Clinics. Arthritis Care Res (Hoboken). 2020 Mar;72(3):369-377. doi: 10.1002/acr.23858.
[31] Katz P, Patterson SL, DeQuattro K, et al. The association of trauma with self-reported flares and disease activity in systemic lupus erythematosus (SLE). Rheumatology (Oxford). 2022 Dec 8:keac690. doi: 10.1093/rheumatology/keac690.
[32] Gioti O, Chavatza K, Nikoloudaki M, et al. Residual disease activity and treatment intensification in systemic lupus erythematosus: A cross-sectional study to quantify the need for new therapies. Lupus. 2022 Dec;31(14):1726-1734. doi: 10.1177/09612033221129776.
[33] Murimi-Worstell IB, Lin DH, Nab H, et al. Association between organ damage and mortality in systemic lupus erythematosus: a systematic review and meta-analysis. BMJ Open. 2020 May 21;10(5):e031850. doi: 10.1136/bmjopen-2019-031850.
[34] Conrad N, Verbeke G, Molenberghs G, et al. Autoimmune diseases and cardiovascular risk: a population-based study on 19 autoimmune diseases and 12 cardiovascular diseases in 22 million individuals in the UK. Lancet. 2022 Sep 3;400(10354):733-743. doi: 10.1016/S0140-6736(22)01349-6.
[35] Osmani Z, Schrama TJ, Zacouris-Verweij W, et al. Hydroxychloroquine treatment in European patients with lupus erythematosus: dosing, retinopathy screening and adherence. Lupus Sci Med. 2021 Mar;8(1):e000478. doi: 10.1136/lupus-2021-000478.
[36] Lenfant T, Costedoat-Chalumeau N. Hydroxychloroquine dose: balancing toxicity and SLE flare risk. Nat Rev Rheumatol. 2023 Jan;19(1):6-7. doi: 10.1038/s41584-022-00868-3.
[37] Wiebe E, Huscher D, Schaumburg D, et al. Optimising both disease control and glucocorticoid dosing is essential for bone protection in patients with rheumatic disease. Ann Rheum Dis. 2022 Jun 9;81(9):1313–22. doi: 10.1136/annrheumdis-2022-222339.
[38] Stamm B, Barbhaiya M, Siegel C, Lieber S, Lockshin M, Sammaritano L. Infertility in systemic lupus erythematosus: what rheumatologists need to know in a new age of assisted reproductive technology. Lupus Sci Med. 2022 Dec;9(1):e000840. doi: 10.1136/lupus-2022-000840.
[39] Drosos GC, Vedder D, Houben E, et al. EULAR recommendations for cardiovascular risk management in rheumatic and musculoskeletal diseases, including systemic lupus erythematosus and antiphospholipid syndrome. Ann Rheum Dis. 2022 Jun;81(6):768-779. doi: 10.1136/annrheumdis-2021-221733.
[40] Mok CC. Herpes zoster vaccination in systemic lupus erythematosus: the current status. Hum Vaccin Immunother. 2019;15(1):45-48. doi: 10.1080/21645515.2018.1514228.
[41] Fragoulis GE, Nikiphorou E, Dey M, et al. 2022 EULAR recommendations for screening and prophylaxis of chronic and opportunistic infections in adults with autoimmune inflammatory rheumatic diseases. Ann Rheum Dis. 2022 Nov 3:ard-2022-223335. doi: 10.1136/ard-2022-223335.
[42] Melles RB, Jorge AM, Marmor MF, et al. Hydroxychloroquine Dose and Risk for Incident Retinopathy: A Cohort Study. Ann Intern Med. 2023 Jan 17. doi: 10.7326/M22-2453.
[43] Chavatza K, Kostopoulou M, Nikolopoulos D, et al. Quality indicators for systemic lupus erythematosus based on the 2019 EULAR recommendations: development and initial validation in a cohort of 220 patients. Ann Rheum Dis. 2021 Sep;80(9):1175-1182. doi: 10.1136/annrheumdis-2021-220438.
[44] Wang H, Li T, Sun F, et al. Safety and efficacy of the SGLT2 inhibitor dapagliflozin in patients with systemic lupus erythematosus: a phase I/II trial. RMD Open. 2022 Oct;8(2):e002686. doi: 10.1136/rmdopen-2022-002686.
[45] Solomon DH, Glynn RJ, Karlson EW, et al. Adverse Effects of Low-Dose Methotrexate: A Randomized Trial. Ann Intern Med. 2020 Mar 17;172(6):369-380. doi: 10.7326/M19-3369.
[46] Jourde-Chiche N, Costedoat-Chalumeau N, Baumstarck K, et al. Weaning of maintenance immunosuppressive therapy in lupus nephritis (WIN-Lupus): results of a multicentre randomised controlled trial. Ann Rheum Dis. 2022 Oct;81(10):1420-1427. doi: 10.1136/annrheumdis-2022-222435.
[47] Mathian A, Pha M, Haroche J, et al. Withdrawal of low-dose prednisone in SLE patients with a clinically quiescent disease for more than 1 year: a randomised clinical trial. Ann Rheum Dis. 2020 Mar;79(3):339-346. doi: 10.1136/annrheumdis-2019-216303.
[48] Tani C, Elefante E, Signorini V, et al. Glucocorticoid withdrawal in systemic lupus erythematosus: are remission and low disease activity reliable starting points for stopping treatment? A real-life experience. RMD Open. 2019 Jun 11;5(2):e000916. doi: 10.1136/rmdopen-2019-000916.
[49] Nakai T, Fukui S, Ikeda Y, Suda M, Tamaki H, Okada M. Glucocorticoid discontinuation in patients with SLE with prior severe organ involvement: a single-center retrospective analysis. Lupus Sci Med. 2022 Jun;9(1):e000682. doi: 10.1136/lupus-2022-000682.
[50] Ji L, Gao D, Hao Y, et al. Low-dose glucocorticoids withdrawn in systemic lupus erythematosus: a desirable and attainable goal. Rheumatology (Oxford). 2022 Apr 12:keac225. doi: 10.1093/rheumatology/keac225.
[51] Ji L, Xie W, Zhang Z. Low-dose glucocorticoids should be withdrawn or continued in systemic lupus erythematosus? A systematic review and meta-analysis on risk of flare and damage accrual. Rheumatology (Oxford). 2021 Dec 1;60(12):5517-5526. doi: 10.1093/rheumatology/keab149.
[52] Fasano S, Coscia MA, Pierro L, Ciccia F. Which patients with systemic lupus erythematosus in remission can withdraw low dose steroids? Results from a single inception cohort study. Lupus. 2021 May;30(6):991-997. doi: 10.1177/09612033211002269.
[53] Ji L, Xie W, Fasano S, Zhang Z. Risk factors of flare in patients with systemic lupus erythematosus after glucocorticoids withdrawal. A systematic review and meta-analysis. Lupus Sci Med. 2022 Jan;9(1):e000603. doi: 10.1136/lupus-2021-000603.
[54] Fernandez-Ruiz R, Bornkamp N, Kim MY, et al. Discontinuation of hydroxychloroquine in older patients with systemic lupus erythematosus: a multicenter retrospective study. Arthritis Res Ther. 2020 Aug 17;22(1):191. doi: 10.1186/s13075-020-02282-0.
[55] Almeida-Brasil CC, Hanly JG, Urowitz M, et al. Flares after hydroxychloroquine reduction or discontinuation: results from the Systemic Lupus International Collaborating Clinics (SLICC) inception cohort. Ann Rheum Dis. 2022 Mar;81(3):370-378. doi: 10.1136/annrheumdis-2021-221295.
[56] Bae SC, Bass DL, Chu M, et al. The effect of 24-week belimumab treatment withdrawal followed by treatment restart in patients with SLE: an open-label, non-randomised 52-week study. Arthritis Res Ther. 2022 Feb 16;24(1):46. doi: 10.1186/s13075-022-02723-y.
[57] Aim MA, Queyrel V, Tieulié N, et al. Importance of temporality and context in relation to life habit restrictions among patients with systemic lupus erythematosus: A psychosocial qualitative study. Lupus. 2022 Aug 2:9612033221115966. doi: 10.1177/09612033221115966.
[58] Condon MB, Ashby D, Pepper RJ, et al. Prospective observational single-centre cohort study to evaluate the effectiveness of treating lupus nephritis with rituximab and mycophenolate mofetil but no oral steroids. Ann Rheum Dis. 2013 Aug;72(8):1280-6. doi: 10.1136/annrheumdis-2012-202844.
[59] Blaess J, Goepfert T, Geneton S, et al. Benefits & risks of physical activity in patients with Systemic Lupus Erythematosus: a systematic review of the literature. Semin Arthritis Rheum. 2022 Nov 19;58:152128. doi: 10.1016/j.semarthrit.2022.152128.
[60] Conceição CTM, Meinão IM, Bombana JA, Sato EI. Psychoanalytic psychotherapy improves quality of life, depression, anxiety and coping in patients with systemic lupus erythematosus: a controlled randomized clinical trial. Adv Rheumatol. 2019 Jan 22;59(1):4. doi: 10.1186/s42358-019-0047-y.
[61] Martin KR, Bachmair EM, Aucott L, et al. Protocol for a multicentre randomised controlled parallel-group trial to compare the effectiveness of remotely delivered cognitive-behavioural and graded exercise interventions with usual care alone to lessen the impact of fatigue in inflammatory rheumatic diseases (LIFT). BMJ Open. 2019 Jan 30;9(1):e026793. doi: 10.1136/bmjopen-2018-026793.
[62] Raveendran AV, Ravindran V. Clinical inertia in rheumatology practice. J R Coll Physicians Edinb. 2021 Dec;51(4):402-406. doi: 10.4997/JRCPE.2021.420.
[63] Manalastas G, Noble LM, Viney R, Griffin AE. What does the structure of a medical consultation look like? A new method for visualising doctor-patient communication. Patient Educ Couns. 2021 Jun;104(6):1387-1397. doi: 10.1016/j.pec.2020.11.026.
[64] Noble LM, Manalastas G, Viney R, Griffin AE. Does the structure of the medical consultation align with an educational model of clinical communication? A study of physicians' consultations from a postgraduate examination. Patient Educ Couns. 2022 Jun;105(6):1449-1456. doi: 10.1016/j.pec.2021.10.001.
[65] Porta SV, Ugarte-Gil MF, García-de la Torre I, et al. Controversies in Systemic Lupus Erythematosus: Are We Treating Our Patients Adequately? J Clin Rheumatol. 2022 Mar 1;28(2):e651-e658. doi: 10.1097/RHU.0000000000001803.
[66] Schlencker A, Messer L, Ardizzone M, et al. Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study. Lupus Sci Med. 2022 May;9(1):e000700. doi: 10.1136/lupus-2022-000700.
[67] Singh JA, Hearld LR, Hall AG, Beasley TM. Implementing the DEcision-Aid for Lupus (IDEAL): study protocol of a multi-site implementation trial with observational, case study design : Implementing the DEcision-Aid for Lupus. Implement Sci Commun. 2021 Mar 11;2(1):30. doi: 10.1186/s43058-021-00118-9.
[68] Mucke J, Kuss O, Brinks R, Schanze S, Schneider M. LUPUS-BEST-treat-to-target in systemic lupus erythematosus: study protocol for a three-armed cluster-randomised trial. Lupus Sci Med. 2021 Jul;8(1):e000516. doi: 10.1136/lupus-2021-000516.
[69] Yajima N, Tsujimoto Y, Fukuma S, et al. The development of quality indicators for systemic lupus erythematosus using electronic health data: A modified RAND appropriateness method. Mod Rheumatol. 2020 May;30(3):525-531. doi: 10.1080/14397595.2019.1621419.
[70] Md Yusof MY, Vital EM. Early intervention in systemic lupus erythematosus: time for action to improve outcomes and health-care utilization. Rheumatol Adv Pract. 2021 Dec 28;6(1):rkab106. doi: 10.1093/rap/rkab106.
[71] Testa D, Jourde-Chiche N, Mancini J, Varriale P, Radoszycki L, Chiche L. Unsupervised clustering analysis of data from an online community to identify lupus patient profiles with regards to treatment preferences. Lupus. 2021 Oct;30(11):1837-1843. doi: 10.1177/09612033211033977.
[72] Fraenkel L, Bodardus S, Wittnik DR. Understanding patient preferences for the treatment of lupus nephritis with adaptive conjoint analysis. Med Care. 2001 Nov;39(11):1203-16. doi: 10.1097/00005650-200111000-00007.