LupusPub Date : 2024-10-01Epub Date: 2024-08-04DOI: 10.1177/09612033241273023
Sofia Flouda, Evgenia Emmanouilidou, Anastasios Karamanakos, Dimitra Koumaki, Dimitrios Katsifis-Nezis, Argyro Repa, George Bertsias, Dimitrios Boumpas, Antonis Fanouriakis
{"title":"Anifrolumab for systemic lupus erythematosus with multi-refractory skin disease: A case series of 18 patients.","authors":"Sofia Flouda, Evgenia Emmanouilidou, Anastasios Karamanakos, Dimitra Koumaki, Dimitrios Katsifis-Nezis, Argyro Repa, George Bertsias, Dimitrios Boumpas, Antonis Fanouriakis","doi":"10.1177/09612033241273023","DOIUrl":"10.1177/09612033241273023","url":null,"abstract":"<p><strong>Objective: </strong>Skin involvement is common in systemic lupus erythematosus (SLE), but may be resistant to conventional treatment. We sought to evaluate the efficacy of anifrolumab (ANI) in refractory cutaneous manifestations of SLE.</p><p><strong>Methods: </strong>Case series of patients with refractory cutaneous SLE from three Rheumatology Departments in Greece. Outcome measures were improvement in Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K), physician global assessment (PGA) and Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI). Clinically relevant improvement in skin was defined as decrease ≥50% (CLASI50) from baseline values.</p><p><strong>Results: </strong>Eighteen patients received ANI; all had active skin involvement at baseline. Mean (SD) SLEDAI and PGA at ANI initiation were 7.4 (2.7) and 1.4 (0.5), respectively, with a mean prednisone dose 4.9 (4.5) mg/day. Mean CLASI (Activity/Damage) at baseline was 13.9 (9.7)/2.9 (4.6). Patients were refractory to a mean 6.3 (1.5) immunomodulatory agents (including hydroxychloroquine and glucocorticoids) before the initiation of ANI. After a mean 8.5 (4.6) months, 89% (<i>n</i> = 16/18) of patients demonstrated significant improvement in general lupus and cutaneous disease activity, and glucocorticoid tapering. Mean SLEDAI and mean CLASI at last visit were 3.4 (1.9) and 2.1 (2.4)/1.4 (2.2), respectively, and mean daily prednisone dose decreased to 2.4 (2.2). Of note, in this group of highly refractory patients CLASI50 was achieved in 16/18 (89%) patients. One patient discontinued ANI after 4 infusions due to a varicella-zoster virus infection and one patient, who initially responded to treatment with ANI, experienced a skin flare due to temporary discontinuation due to Covid 19 infection. DORIS remission and LLDAS were attained in two (11.1%) and eleven (61.1%) patients, respectively.</p><p><strong>Conclusion: </strong>Anifrolumab is highly effective in various skin manifestations of SLE, even after prior failure to multiple treatments.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"1248-1253"},"PeriodicalIF":1.9,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141889646","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
LupusPub Date : 2024-10-01DOI: 10.1177/09612033241280548
Alex Domínguez-Vargas, Henry González-Torres, Álvaro Martínez-Bayona, María Sanguino-Jaramillo, María Vélez-Verbel, Andrés Cadena-Bonfanti, Carlos Guido Musso, Santos Depine, Eduardo Egea, Gustavo Aroca-Martínez
{"title":"Treatment adherence and quality of life in colombian patients with lupus nephritis.","authors":"Alex Domínguez-Vargas, Henry González-Torres, Álvaro Martínez-Bayona, María Sanguino-Jaramillo, María Vélez-Verbel, Andrés Cadena-Bonfanti, Carlos Guido Musso, Santos Depine, Eduardo Egea, Gustavo Aroca-Martínez","doi":"10.1177/09612033241280548","DOIUrl":"https://doi.org/10.1177/09612033241280548","url":null,"abstract":"<p><strong>Background: </strong>As with many other chronic diseases, systemic lupus erythematosus (SLE) and lupus nephritis (LN) have significant impacts on the health-related quality of life (HRQoL). Medication non-adherence is a significant challenge in the management of SLE, with consistently up to 75% of patients being non-adherent with their SLE medications. There is a need to assess the patient's perspective using patient-reported outcomes (PROs) to better understand the current impact of LN on HRQoL and treatment adherence in our region. The aim of this study was to explore the relationship between HRQoL and treatment adherence in patients with LN from the Colombian Caribbean.</p><p><strong>Methods: </strong>A cross-sectional study was conducted from June to December 2022, including patients with biopsy-proven LN. HRQoL and treatment adherence were assessed using the Lupus Quality of Life (LupusQoL) and the Compliance Questionnaire in Rheumatology 19 (CQR19) instruments, respectively. Patients were categorized as adherent or non-adherent based on medication intake (defined as >80% correct dosage). Principal component analysis (PCA) was employed to identify principal components between adherent and non-adherent patients.</p><p><strong>Results: </strong>A total of 42 patients with LN were included. Of these, 38 (90%) were female, and the mean age was 31 ± 10 years. Proliferative class IV was the predominant histopathological profile (90%). Twenty-five (60%) patients were categorized as non-adherent. Across all LupusQoL domains, a comprehensive range of responses was observed. Pain, planning, and intimate relationships domains remained unaffected, while burden to others domain had the lowest score. Poorer planning score correlated with older age (r = -0.72; <i>p</i> < .05) and longer disease duration (r = -0.74; <i>p</i> < .05). SLEDAI-2 K correlated with the pain domain (r = -0.78; <i>p</i> < .05). Non-adherent patients exhibited significantly worse pain domain scores compared to adherent counterparts (<i>p</i> < .05). PCA showed strong interactions between planning and pain, as well as between physical health and body image domains.</p><p><strong>Conclusions: </strong>LupusQoL pain domain scores were significantly worse in non-adherent patients compared to adherent patients. Effective pain management could be a determinant in HRQoL and treatment adherence rates in our population.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"33 12","pages":"1317-1327"},"PeriodicalIF":1.9,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142349417","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
LupusPub Date : 2024-09-17DOI: 10.1177/09612033241281783
Xiaoning Luo, Juanhua Du, Jinjun Zhao, Meida Fan, Xin Luo, Peijin Zhao, Ping Zheng, Liqian Mo, Yilei Li
{"title":"Genetic susceptibility and clinical features of CYP2D6 associated with systemic lupus erythematosus in a Chinese population","authors":"Xiaoning Luo, Juanhua Du, Jinjun Zhao, Meida Fan, Xin Luo, Peijin Zhao, Ping Zheng, Liqian Mo, Yilei Li","doi":"10.1177/09612033241281783","DOIUrl":"https://doi.org/10.1177/09612033241281783","url":null,"abstract":"ObjectiveThis study aims to explore possible susceptibility genes and clinical features for systemic lupus erythematosus (SLE) patients in a Chinese population.MethodsExpanding on the results of a prior single-center observational study involving 60 systemic lupus erythematosus patients, a subsequent single-center prospective observational study was conducted on SLE patients undergoing treatment at Nanfang Hospital Affiliated to Southern Medical University from 2021 to 2023. The identification process for drug-related target genes entailed an extensive search across PharmGKB ( https://www.pharmgkb.org/ ), the Clinical Pharmacogenetics Implementation Consortium (CPIC),and PubMed literature databases, to pinpoint common drugs and target single nucleotide polymorphisms(SNPs)for SLE. Blood samples were individually collected and genotyped using MassARRAY® high-throughput nucleic acid mass spectrometry. Genotype frequency differences were assessed through Chi-square tests against both the larger East Asian population as well as kidney transplant recipients. Data collection relied on electronic medical records, encompassing demographic details(age, gender),medication regimens(hormones, NSAIDs, hydroxychloroquine, DMARDs, biologic agents, stomach medications, calcitriol, etc.),laboratory indicators(RF, Anti-CCP antibody, ESR, CRP, anti-ANA antibodies, dsDNA antibodies, anti-SM antibodies, S m. RNP antibodies, A LT, ALB, CR, UA, WBC, PLT, HGB, Ca, K, Glu, CHOL, TG, LDL-C, HDL-C) and lupus activity scores(SLEDAI-2K). Possible disease susceptibility genes were categorized, and SPSS26 software facilitated statistical analyses.ResultsThe research encompassed a total of 137 SLE patients along with 50 SNPs. After conducting statistical analyses, it emerged that there existed significant disparities in CYP2D6 gene (rs1065852) distribution when compared against allele mutation rates within both East Asian populations ( p < .05) and kidney transplant patients( p < .05). Wild-type gene (GG) constituted 14% of cases while mutant gene (GA + AA) constituted 86%. Allele mutation rate (A63.6%) was significantly higher among SLE patients (RR = 0.802; p = .0355). Furthermore, the variant rs1065852 genotype (GA + AA) demonstrated significant associations with lower CRP levels, higher HGB levels, and higher HDL-C levels ( p < 0 0.05).ConclusionThe metabolic enzyme CYP2D6 may be used as susceptibility gene for predicting systemic lupus erythematosus and are correlated with CRP and other indicators.","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"37 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264849","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Impact of perception of illness on quality of life in juvenile systemic lupus erythematosus","authors":"Nihal Şahin, Kübra Uçak, Sıla Atamyıldız Uçar, Hafize Emine Sönmez, Betül Sözeri","doi":"10.1177/09612033241285622","DOIUrl":"https://doi.org/10.1177/09612033241285622","url":null,"abstract":"ObjectiveSystemic lupus erythematosus (SLE) is a chronic autoimmune disease that affects multiple organs, notably the skin, joints, and kidneys. The primary goal in managing SLE is to enhance patients’ quality of life (QoL). Illness perception can influence QoL in patients with chronic disease. We assessed illness perception in juvenile SLE (jSLE) patients and its effect on patient’s and parental QoL.MethodPatients diagnosed with jSLE according to the SLICC 2012 criteria between January and November 2023 were included. Patients’ illness perceptions were gaged using the brief illness perception questionnaire (B-IPQ), while patient’s and parental QoL were evaluated using PedsQL and WHOQOL- BREF, respectively.ResultsThe study comprised 32 patients and 32 parents, predominantly female (78.1%). Musculoskeletal involvement was the most common (65.6%), followed by mucocutaneous (59.4%), renal, and hematological involvement (50% each). Neuropsychiatric involvement was absent. The median SLEDAI-2K score at the last outpatient clinic visit, which was documented in the patient’s file was 2 (0–18) and was not correlated with the B-IPQ score (r = 0.121, p = .51). A significant negative correlation was found between B-IPQ and patient QoL, indicating poorer QoL in patients with negative illness perceptions (r = −0.576, p < .001). No correlation was observed between parental QoL and B-IPQ ( p => .05). Of note, 56.3% of patients had poor QoL, scoring below the PedsQL cut-off, while 43.8% of parents had poor QoL for general health, scoring below the WHOQOL-BREF cut-off for general health.ConclusionAlthough disease perception did not correlate with disease activation in jSLE, it significantly impacted patient QoL. Enhancing patients’ perceptions of jSLE may improve their overall QoL.","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"31 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264850","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
LupusPub Date : 2024-09-17DOI: 10.1177/09612033241285225
Buse Bor, Andrew J Doyle, John K Bartoli-Abdou, Anthony Hackett, Victoria Collings, Fatima Omrani, Carl Foskett, Anne Wareing, Johanna Young, Karen A Breen, Beverley J Hunt
{"title":"Clinical outcomes of patients receiving long-term fondaparinux for thrombotic antiphospholipid syndrome","authors":"Buse Bor, Andrew J Doyle, John K Bartoli-Abdou, Anthony Hackett, Victoria Collings, Fatima Omrani, Carl Foskett, Anne Wareing, Johanna Young, Karen A Breen, Beverley J Hunt","doi":"10.1177/09612033241285225","DOIUrl":"https://doi.org/10.1177/09612033241285225","url":null,"abstract":"IntroductionVitamin-K antagonists (VKA) are considered the first-line anticoagulants for thrombotic antiphospholipid syndrome (TAPS), particularly with triple positivity or arterial events. However, thrombotic recurrence remains high despite anticoagulation and other clinical issues may arise. Long-term parenteral anticoagulants may therefore be considered, however little is known about the viability of fondaparinux in this setting.Materials and MethodsWe describe the efficacy and safety of long-term fondaparinux for TAPS (>3-months duration) treated at a single centre in the UK. Clinical features and the outcomes of recurrence and bleeding were reviewed using electronic patient records.Results46 patients were identified with history of either venous or arterial TAPS and a total 175 patient-years using fondaparinux (median duration 2.7 years/patient (IQR 1.4–4.8)). 43 (93%) had VKA as first-line anticoagulation with a median duration of 6.5 years (IQR 4.0 – 9.8). All patients received fondaparinux as second-to fourth-line anticoagulation. Thrombosis recurrence occurred in 1 (1%) patient (0.6 events/100-patient years). Major, clinically relevant non-major (CRNM) or minor bleeding occurred in 2 (7%), 5 (10.9%) and 8 (17.4%) patients respectively. Major/CRNM bleeding rates were 1.1 and 2.9 events/100-patient-years. Age >65years was associated with bleeding ( p = .047) and concurrent antiplatelets were associated with major/CRNM bleeding ( p = .011). Logistic regression showed increasing age was associated with bleeding (OR = 1.097, p = .009).ConclusionsWe suggest that fondaparinux may be used for TAPS when VKA is not appropriate. Thrombotic recurrence was infrequent, and the number of major bleeding events appeared comparable to conventional therapies.","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"36 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264854","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
LupusPub Date : 2024-09-17DOI: 10.1177/09612033241284093
Eva Waldheim, Elisabet Welin, Stefan Bergman, Susanne Pettersson
{"title":"The experience and implications of pain in systemic lupus erythematosus: A qualitative interview study focusing on the patient’s perspective","authors":"Eva Waldheim, Elisabet Welin, Stefan Bergman, Susanne Pettersson","doi":"10.1177/09612033241284093","DOIUrl":"https://doi.org/10.1177/09612033241284093","url":null,"abstract":"BackgroundPain is one of the most frequently reported symptoms and often one of the first subjective symptoms in patients with systemic lupus erythematosus (SLE). A previous study indicated that most patients with SLE reported low levels of SLE-related pain. However, a subgroup of patients reported high levels of pain ≥40 mm (0-100 mm) and had a substantial symptom burden in terms of fatigue, anxiety, depression, and reduced health-related quality of life. Thus, there is a need to elucidate the implications of high levels of pain in everyday life.AimThis study explored the patient’s experiences and implications of SLE-related pain in daily life and the support requested from healthcare providers.MethodA total of 20 patients, previously reported high levels of SLE-related pain intensity measuring ≥40 mm (0–100 mm) in a research context at one or two occasions participated in individual semi-structured interviews, which were transcribed and analysed with content analysis.ResultsThe interviews revealed four main categories and 13 generic categories. SLE-associated pain was described by its multifaceted nature, exhibiting longstanding, unpredictable, migrating, and various physical sensations. The pain entailed multidimensional consequences, restricting everyday life by interfering with roles and relationships and causing various emotions, including existential thoughts. The informants used comprehensive strategies to deal with the pain, including their inner resources, support from family and significant others, and pharmaceuticals and relieving treatments. They expressed the need for security and acknowledgement, which involved individualized support and accessibility of healthcare.ConclusionThis study provides comprehensive insights into the nature and multifaceted impact of SLE-related pain in different dimensions of the informants’ daily lives. Except for medications the informants used several strategies, including their inner resources and support from family and others, to manage the pain. Support requested from healthcare providers by the informants included understanding, compassion, individualized care and accessibility.","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"48 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264851","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
LupusPub Date : 2024-09-17DOI: 10.1177/09612033241273082
Yimy F Medina, Manuela R Rivera, Liliana K Duarte, Carlos M Rodriguez-Plata, Emmanuel R De León, Sonia C Rodríguez Martínez
{"title":"Cognitive impairment in a Colombian cohort of patients with systemic lupus erythematosus: A cross-sectional study","authors":"Yimy F Medina, Manuela R Rivera, Liliana K Duarte, Carlos M Rodriguez-Plata, Emmanuel R De León, Sonia C Rodríguez Martínez","doi":"10.1177/09612033241273082","DOIUrl":"https://doi.org/10.1177/09612033241273082","url":null,"abstract":"ContextCognitive deficits are neuropsychiatric syndromes associated with systemic lupus erythematosus. In our context, there are no data on the frequency of cognitive deficit as a manifestation of neuropsychiatric SLE or the associated conditions.ObjectiveTo define determinants of cognitive deficit in a cohort of Colombian patients with SLE attending a third-level hospital.Methods and PatientsThis descriptive cross-sectional study included patients with SLE, explored the presence of cognitive impairment through screening testing using the Montreal Cognitive Assessment (MoCA test), and diagnostic confirmation with a specific neuropsychological test battery recommended by the American College of Rheumatology. Quality of life was assessed using the LupusCol questionnaire and depression using the Beck Depression Inventory.ResultsMost patients were women, with a median age of 37 years (IQR, 28.0 - 46.7). Most patients had a level of higher education or technical education. Fifty-nine (62.9%) patients presented with a normal MoCA test result ≥26 points, and 35 (37.1%) patients with a score <26 points that were considered abnormal. The comprehensive neuropsychological test battery was applied to 31 patients (33.0%) with an abnormal MoCA test. Forty-one patients (48.8%) had some degree of depression. The median loss of quality of life was 21.03% (IQR 10.2 - 40.3). 19 patients (20%) presented some degree of cognitive deficit, 15 (15.95% of the total sample) had cognitive impairment, and 4 (4.25%) had cognitive decline. In a logistic regression analysis using data from patients undergoing specific tests, variables related to cognitive deterioration were found to be associated with a lower quality of life, showing an adjusted odds ratio of 1.05 (CI 1.01-0.09). No association was demonstrated with SLEDAI, prednisolone use, cyclophosphamide use, and the presence of depression.ConclusionIn this study, it was found in 16% of patients evaluated with the complete neuropsychological test battery and in 37% with the MoCA screening test. Our results suggest that it is crucial to implement strategies to assess cognitive deficit, depression, and quality of life in the consultation of patients with SLE and to raise awareness among health providers who care for patients with lupus about their presence and impact.","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"31 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142265284","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
LupusPub Date : 2024-09-17DOI: 10.1177/09612033241281610
María Fernanda Ordoñez-Rubiano, Paula A. Gutiérrez-Marín
{"title":"Chilblain lupus erythematosus triggered by UV nail lamp exposure: A case series. Chilblain lupus and nail lamp","authors":"María Fernanda Ordoñez-Rubiano, Paula A. Gutiérrez-Marín","doi":"10.1177/09612033241281610","DOIUrl":"https://doi.org/10.1177/09612033241281610","url":null,"abstract":"Two cases of chilblain lupus erythematosus (CLE) potentially triggered by exposure to ultraviolet (UV) nail lamps are presented. These cases, along with a review of the literature, suggest a possible link between UV nail lamp use and CLE development or reactivation. Further research is needed to confirm this association, but healthcare professionals should be aware of the potential risks of this practice, especially for patients with photosensitive conditions.","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"30 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264848","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Factors affecting discrepancies in disease activity evaluation between patients and physicians in systemic lupus erythematosus-The importance of symptoms such as fatigue","authors":"Hiroshi Doi, Koichiro Ohmura, Motomu Hashimoto, Kentaro Ueno, Yudai Takase, Ryuta Inaba, Tomohiro Kozuki, Takeshi Iwasaki, Masashi Taniguchi, Yuya Tabuchi, Mirei Shirakashi, Hideo Onizawa, Hideaki Tsuji, Akira Onishi, Ryu Watanabe, Koji Kitagori, Shuji Akizuki, Kosaku Murakami, Ran Nakashima, Hajime Yoshifuji, Wataru Yamamoto, Takahiro Itaya, Ryuji Uozumi, Masao Tanaka, Akio Morinobu","doi":"10.1177/09612033241281909","DOIUrl":"https://doi.org/10.1177/09612033241281909","url":null,"abstract":"ObjectivesThere are often discrepancies in the evaluation of disease activity between patients and physicians in systemic lupus erythematosus (SLE). In this study, we examined the factors that affect those evaluations.MethodsPhysician visual analogue scale (Ph-VAS), patient VAS (Pt-VAS), Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2k), glucocorticoid (GC) usage and dose, age, Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index, and three patient-reported outcomes (SLE symptom checklist [SSC], short-form 36 questionnaire [SF-36], and LupusPRO) were obtained from a study performed in 2019 using 225 SLE outpatients of the Kyoto Lupus Cohort at Kyoto University Hospital. Correlations among Ph-VAS, Pt-VAS, or dif (Pt-VAS-Ph-VAS) (Pt-VAS minus Ph-VAS) and other factors were examined.ResultsWe found a significant discrepancy between Pt-VAS (median 38.0 mm) and Ph-VAS (median 18.7 mm) scores ( p < 0.001). SSC score showed a significant correlation with Pt-VAS and dif (Pt-VAS-Ph-VAS) ( p < 0.001). Among SSC items, fatigue showed the most significant correlation with dif (Pt-VAS-Ph-VAS). We also showed that higher dif (Pt-VAS-Ph-VAS) was associated with lower quality of life (QOL) evaluated by SF-36 and LupusPRO.ConclusionsPt-VAS scores tended to be higher than Ph-VAS scores, and the discrepancy was influenced mainly by fatigue. Higher dif (Pt-VAS-Ph-VAS) was associated with lower patient QOL.","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"1 1","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264853","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Mortality and prognostic factors among inpatients with systemic lupus erythematosus in China: A 20-year retrospective study","authors":"Fei Dong, Cheng Zhao, Ling Lei, Leting Zheng, Jing Wen, Fang Qin","doi":"10.1177/09612033241283547","DOIUrl":"https://doi.org/10.1177/09612033241283547","url":null,"abstract":"ObjectiveTo summarize the causes of death and clinical characteristics of systemic lupus erythematosus (SLE) hospitalized patients in the last 20 years to improve SLE survival rates by detecting critical SLE early.MethodsIn this case-control study, 218 SLE death cases were retrospectively analyzed from January 2002 to December 2022, with 110 SLE inpatients chosen at random as controls. The clinical symptoms, causes of death, and risk factors in patients with SLE were investigated.ResultsThere were 218 deaths among 9538 patients with SLE, including 188 women and 30 men. The death rate fell steadily from 4.14% in 2002 to 1.96% in 2013 and remained at 1.84% from 2014 to 2022. The standardized mortality ratio (SMR) was 4.98 [95% CI (4.06-5.89)] from 2002 to 2012 and 3.39 [95% CI (2.74-4.04)] from 2013 to 2022. Infection, lupus-induced multiple organ failure syndrome (MODS), and neuropsychiatric lupus (NPLE) were the leading causes of death, accounting for 31.19%, 15.14%, and 11.47% of overall deaths. Age had a significant association with the major causes of death. Logistic regression analysis showed NPLE[OR = 10.772,95% CI (3.350,34.633), p < 0.001], lupus pulmonary involvement (LP)[OR = 3.844,95%CI (1.547,9.552), p = 0.004], pneumonia[OR = 3.439,95%CI(1.552,7.621), p = 0.002], thrombocytopenia[OR = 14.941,95%CI (4.088,54.604), p < 0.001], creatinine>177 μmol/L[OR = 8.644,95%CI (2.831,26.388), p < 0.001], glutamic transaminase(AST) > 60U/L[OR = 5.762,95%CI (2.200,15.088), p < 0.001], total bilirubin > 34 μmol/L[OR = 16.701,95%CI (3.349,83.294), p = 0.001], higher SLE Disease Activity Index (SLEDAI)[OR = 1.089,95%CI (1.032,1.149), p = 0.002] and SLE Damage Index (SDI)[OR = 3.690,95%CI (2.487,5.474), p < 0.001] correlated positively with death.ConclusionFrom 2002 to 2013, the mortality rate among patients with SLE fell steadily but remained unchanged from 2014 to 2022. Patients with SLE had significantly higher SMR than the general population. Childhood-onset SLE had a poorer prognosis than adult-onset SLE. Infection, MODS, and NPLE were the three leading causes of death. Major organ involvement and high disease activity were risk factors for mortality.","PeriodicalId":18044,"journal":{"name":"Lupus","volume":"56 1","pages":"9612033241283547"},"PeriodicalIF":2.6,"publicationDate":"2024-09-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142264893","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}