📇 Rhumatologue · LA ROCHELLE CEDEX 1 · (17) · Libéral
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HOPITAL SAINT-LOUIS - LA ROCHELLE
R DU DR SCHWEITZER, 17019 LA ROCHELLE CEDEX 1
CABINET DU DR MAELLE RIVIERE
SOS MEDECINS 35 RUE NICOLAS DENYS DE FRONSAC, 17000 LA ROCHELLE
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Lupus science & medicine · 2019
From a 1-year survival of less than 50% before the discovery of glucocorticoids to over 90% at 10 years in most dedicated centres, the spectrum of SLE has profoundly evolved. Despite this improvement, several major challenges currently remain. The aim of this review is to analyse what are, according to us, the 10 most important contemporary challenges in the management of SLE. Among those are the need to treat to target to favour disease remission (or low disease activity), limit the use of glucocorticoids, derive more comprehensive tools for the evaluation of disease activity, develop more effective drugs (yielding successful trials), dissect the heterogeneity of the disease both at the molecular and genetic levels, identify relevant biomarkers for individualised treatment, manage fertility and pregnancy, tackle comorbidities such as cardiovascular risk, the prevention of infections and osteoporosis, improve the network of care (from the patients’ perspective), and favour a holistic approach (integrating fatigue, adherence to treatment, physical activity). Altogether, these 10 contemporary challenges in SLE may be considered as a roadmap for those involved in the daily care of patients with SLE, as well as for researchers who may wish to contribute to an improved management of this rare and complex disease.
Healthcare (Basel, Switzerland) · 2022
Objectives: We aimed to evaluate the difficulties encountered by systemic lupus erythematosus (SLE) patients during the early COVID-19 pandemic and to evaluate their impact on patient mental health. Methods: We conducted a nationwide survey including SLE patients from France, recruited by their treating specialist or through a patient association. The survey was administered online or in paper form between November 2020 and April 2021 and included questions aiming at evaluating the difficulties encountered during the early COVID-19 pandemic (March to August 2020). The impact on mental health was evaluated using the Hospital Anxiety and Depression Scale (HADS) and the Post-Traumatic Stress Disorder (PTSD) Checklist for DSM-5 (PCL-5). Results: 536 SLE patients (91.9% women) of mean age 50 (±14.1) years responded to the survey. The main reported difficulties were issues regarding access to medical care (n = 136, 25.4%) or hydroxychloroquine treatment (n = 98/389, 25.2%), the loss of employment (n = 85/349, 24.4%), and financial difficulties (n = 75/536, 11%). In 328 patients with complete mental health assessments, 161 (47.2%) screened positive for anxiety, 141 (41.2%) screened positive for depressive syndrome, and 128 (38.7%) screened positive for PTSD. The multivariate analysis showed that female sex (OR = 4.29 [95%CI: 1.39–13.24]), financial issues (OR = 2.57 [1.27–5.22]), and difficulties accessing medical care (OR = 2.15 [1.26–3.69]) or hydroxychloroquine treatment (OR = 1.90 [1.06–3.40]) were independently associated with a positive screening for PTSD. Conclusions: The COVID-19 pandemic resulted in a severe burden in SLE patients, including difficulties accessing care and treatment along with high psychological distress. Better understanding these difficulties will allow for better prevention and care in times of crisis.
RMD open · 2025
Objective To develop and validate LUPIN, a self-administered, patient-centred questionnaire codesigned by patients and lupus specialists to assess disease activity and patient-reported outcomes in systemic lupus erythematosus (SLE). Methods LUPIN and the SF-36 questionnaires were distributed across 34 centres in both metropolitan France and overseas territories. Patients completed the questionnaire prior to their consultations. Physicians, blinded to patients’ responses, assessed disease activity using SLE Disease Activity Index 2000 (SLEDAI-2K) and Physician Global Assessment (PhGA). Correlations and discordances between patient and physician assessments were analysed. Results Among 444 participants (85% women, mean age 45 years), the most common manifestations included joint (86%) and skin (72%) involvement; 35% had a history of lupus nephritis. While correlations between LUPIN scores and SLEDAI/PhGA were statistically significant but modest (r<0.39), stronger associations were observed with SF-36 domains for fatigue (r=0.65), pain (r=0.65), and physical function (r=0.69). In patients with active SLE (SLEDAI≥4; n=153), the correlation between LUPIN and clinical SLEDAI improved (r=0.53, p<0.0001). Discordances were primarily driven by patient-reported fatigue and pain, unrelated to suspected mechanical or central pain syndromes. Conclusion LUPIN effectively captures symptom domains that are often under-represented in conventional clinical indices and reflects the lived burden of disease in SLE. It offers a practical, scalable tool to support patient engagement, shared decision-making and individualised disease monitoring. A longitudinal digital study is underway to further assess its value in tracking disease fluctuations over time.
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ACR open rheumatology · 2026 · Journal Article
Chiche L, Devilliers H, Vallée R, Taccola C, et al.
RMD open · 2025 · Journal Article
Scherlinger M, Kleinmann JF, Folliasson A, Riviere M, et al.
Healthcare (Basel, Switzerland) · 2022 · Journal Article
Scherlinger M, Zein N, Gottenberg JE, Rivière M, et al.
Lupus science & medicine · 2019 · Journal Article
Felten R, Sagez F, Gavand PE, Martin T, et al.