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Reversibility of pulmonary hypertension in systemic lupus erythematosus after induction immunosuppressive therapy: An inflammatory manifestation? 系统性红斑狼疮患者在接受诱导免疫抑制治疗后肺动脉高压可逆:炎症表现?
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-11-15 DOI: 10.1177/09612033241301183
Ana Paula Luppino-Assad, Jose Leonidas Alves Junior, Emily Figueiredo Neves Yuki, Luciana Parente Costa Seguro, Sandra Gofinet Pasoto, Caio Julio Cesar Dos Santos Fernandes, Juliana Sobral-Alves, Carlos Viana Poyares Jardim, Eloisa Bonfá, Rogerio Souza, Eduardo F Borba
{"title":"Reversibility of pulmonary hypertension in systemic lupus erythematosus after induction immunosuppressive therapy: An inflammatory manifestation?","authors":"Ana Paula Luppino-Assad, Jose Leonidas Alves Junior, Emily Figueiredo Neves Yuki, Luciana Parente Costa Seguro, Sandra Gofinet Pasoto, Caio Julio Cesar Dos Santos Fernandes, Juliana Sobral-Alves, Carlos Viana Poyares Jardim, Eloisa Bonfá, Rogerio Souza, Eduardo F Borba","doi":"10.1177/09612033241301183","DOIUrl":"10.1177/09612033241301183","url":null,"abstract":"<p><strong>Objective: </strong>To evaluate the possible reversibility of PAH to a normopressoric state in SLE after induction immunosuppressive (IS) and predictors of response.</p><p><strong>Methods: </strong>We retrospectively evaluated all SLE-PAH patients who underwent IS therapy at our center. PAH reversion was defined as the normalization of pulmonary arterial pressure (PAP), either by the presence of systolic PAP <40 mmHg on echocardiogram or mean PAP <20 mmHg on right heart catheterization (RHC). SLE patients were divided in Reversion and No-Reversion of SLE-PAH groups for comparative analysis at baseline and after IS.</p><p><strong>Results: </strong>Among 2,074 SLE patients, 28 SLE-PAH received IS therapy (1.3%). Ten patients (35.7%) achieved SLE-PAH reversion. Demographic data, disease duration, SLEDAI-2K, and SDI Damage scores were similar between Reversion and No-Reversion of SLE-PAH groups (<i>p</i> > 0.05). At baseline, Reversion of SLE-PAH had lower sPAP (<i>p</i> = 0.032), lower right ventricle dilatation (<i>p</i> = 0.003) and hypokinesia (<i>p</i> = 0.017) frequencies on echocardiogram, and also lower BNP levels (<i>p</i> = 0.041) and risk stratification score (<i>p</i> = 0.014). Hemodynamic parameters were similar among groups (<i>p</i> > 0.05). After IS, a significant decrease in CRP levels was identified only in Reversion of SLE-PAH (<i>p</i> = 0.013), although both groups had a significant reduction in SLEDAI-2K (<i>p</i> < 0.05). Both groups had significant improvement in risk stratification score (<i>p</i> = 0.009 and <i>p</i> < 0.001) with a better survival rate in Reversion of SLE-PAH (<i>p</i> = 0.047).</p><p><strong>Conclusion: </strong>This is the first study that identified that more than one third of SLE-PAH had a complete reversion of PAH after IS therapy with a significant impact on their survival. These findings strongly support the notion of an underlying inflammatory etiology of this condition, which reinforces the use of immunosuppressive treatment for all SLE patients at PAH onset.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"18-27"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142644387","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}
引用次数: 0
The first use of "lupus" as a disease. 第一次使用“狼疮”作为一种疾病。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-12-09 DOI: 10.1177/09612033241306790
Donald E Thomas, Antoine Enfrein, Robert Hal Scofield
{"title":"The first use of \"lupus\" as a disease.","authors":"Donald E Thomas, Antoine Enfrein, Robert Hal Scofield","doi":"10.1177/09612033241306790","DOIUrl":"10.1177/09612033241306790","url":null,"abstract":"<p><strong>Objectives: </strong>Describe the history of the use of the term \"lupus\" as a disease and to point out the inaccuracies of previous lupus historical articles and correct the historical record.</p><p><strong>Methods: </strong>An exhaustive review of Medieval and later texts regarding the use of the term \"lupus\" as it was used for the name of a disease as well as personal communications with Medieval experts who have studied this topic.</p><p><strong>Results: </strong>There are three possible first uses of \"lupus\" as a disease: an affidavit written in 963 AD by Eraclius (Bishop of Liège, Belgium), in a 12th century historical account of the Bishop of Liège, falsely ascribed to the 9th century Bishop Herbernus, or in an 1170 AD letter written by Pierre de Blois about the death of archbishop Stephan du Perche. The first use of \"lupus\" in a medical text was by Rolando da Parma in a 1230 AD surgical treatise. <i>Lupus</i>, Latin for wolf, was not used to describe lesions that looked like wolf bites. Instead, it was first used to describe potentially deadly skin lesions that devoured the affected person's skin and \"internal matter.\" The first described lupus treatment was freshly killed chicken flesh applied to the lesions so they would \"wolfishly\" eat the chicken rather than the person's flesh. At least 25 modern historical articles, book chapters, and academic theses on the topic contain incorrect dates, story authorship ascriptions, reason for the use of \"lupus\" and other facts. There is no proof that Hippocrates described lupus. The Basilica of St Martin (Liege, Belgium), was originally built in the 10th century by Eraclius, Bishop of Liege, out of gratitude to St Martin for curing him of \"lupus.\"</p><p><strong>Conclusions: </strong>The first use of the word \"lupus\" as a disease originated in either the 10th or 12th centuries. It described a deadly disease affecting the buttocks and legs that \"wolfishly\" devoured the person's flesh and \"internal matter\" as well as doctor-prescribed fresh chicken flesh placed on the lesions. Authors of medical history articles should evaluate original historical texts and not simply repeat what other modern articles have written.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"3-9"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142794971","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}
引用次数: 0
Real world application of the 2023 ACR/EULAR antiphospholipid antibody syndrome classification criteria in a pharmacist directed anticoagulation clinic. 2023 ACR/EULAR 抗磷脂抗体综合征分类标准在药剂师指导的抗凝门诊中的实际应用。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-11-14 DOI: 10.1177/09612033241301173
Catherine DeFazio, Lara Horvath, Jennifer Morgan, Meaghan B Murphy, Ashley N Shtoyko, Elizabeth M Phillips
{"title":"Real world application of the 2023 ACR/EULAR antiphospholipid antibody syndrome classification criteria in a pharmacist directed anticoagulation clinic.","authors":"Catherine DeFazio, Lara Horvath, Jennifer Morgan, Meaghan B Murphy, Ashley N Shtoyko, Elizabeth M Phillips","doi":"10.1177/09612033241301173","DOIUrl":"10.1177/09612033241301173","url":null,"abstract":"<p><strong>Objectives: </strong>To determine the number of patients that met classification for antiphospholipid antibody syndrome (APS) after applying the 2023 American College of Rheumatology and the European Alliance for Associations of Rheumatology (ACR/EULAR) classification criteria, to identify reasons patients did not meet the new criteria, and determine the number of patients who were single, double, or triple positive based on laboratory criteria.</p><p><strong>Methods: </strong>A single center, retrospective chart review of patients with APS on anticoagulation managed by ambulatory care clinical pharmacists. Data collected included patient demographics, type of anticoagulation, and clinical and laboratory criteria for APS as defined by the 2023 ACR/EULAR criteria. Data is presented using descriptive statistics.</p><p><strong>Results: </strong>A total of 51 patients previously diagnosed with APS were included. There were 42 patients on warfarin (82.3%), 4 patients on direct oral anticoagulants (19%), 3 patients on low molecular weight heparin (5.8%), and 2 patients on fondaparinux (3.9%). Of the 51 patients, 12 (23.5%) met classification criteria, 33 (64.7%) did not meet classification criteria and 6 (11.7%) had insufficient data. Of the 27 patients that did not meet criteria, 13 patients did not meet the laboratory criteria (39.4%), 6 patients did not meet the clinical criteria (18.2%) and 14 patients did not meet both laboratory and clinical criteria (42.4%). Of the 12 patients that met classification criteria, 2 patients were triple positive (16.7%), 3 were double positive (25%), and 7 were single positive (58.3%).</p><p><strong>Conclusions: </strong>Results from this study indicate that APS continues to be a complex disease state with challenges in diagnosis and classification. Since only a small number of patients in our clinic continued to meet the classification criteria, opportunities for patient re-evaluation of management strategies at our institution could be considered.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"34-38"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142622935","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}
引用次数: 0
Examination of antinuclear antibody staining patterns and titers in patients with childhood-onset systemic lupus erythematosus. 研究儿童期系统性红斑狼疮患者的抗核抗体染色模式和滴度。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-11-27 DOI: 10.1177/09612033241305198
Seher Sener, Ezgi Deniz Batu, Dilara Unal, Ozge Basaran, Zeynep Saribas, Yelda Bilginer, Burcin Sener, Seza Ozen
{"title":"Examination of antinuclear antibody staining patterns and titers in patients with childhood-onset systemic lupus erythematosus.","authors":"Seher Sener, Ezgi Deniz Batu, Dilara Unal, Ozge Basaran, Zeynep Saribas, Yelda Bilginer, Burcin Sener, Seza Ozen","doi":"10.1177/09612033241305198","DOIUrl":"10.1177/09612033241305198","url":null,"abstract":"<p><strong>Objective: </strong>Antinuclear antibodies (ANA) staining patterns can provide useful information in systemic lupus erythematosus (SLE). In our study, we examined the frequency of ANA staining patterns in disease-related features in childhood-onset SLE patients.</p><p><strong>Methods: </strong>ANA and its staining patterns were assessed in childhood-onset SLE patients.</p><p><strong>Results: </strong>Two hundred twenty-three patients were included (F/M = 3/1). Their median age at diagnosis was 14.3 (11.9-16.1) years. The anti-cell (AC)-4/5 (fine or large speckled) pattern was the most common nuclear ANA pattern (75.8%), while the AC-19 (dense fine speckled) pattern was the most frequently detected cytoplasmic ANA pattern (13.1%). The AC-4/5 (fine or large speckled) patterns were notably seen in fever, acute and chronic cutaneous lupus, arthritis, serositis, hematologic involvement, renal involvement, neuropsychiatric involvement, gastrointestinal involvement, and cardiopulmonary involvement (all <i>p</i> < .001). Conversely, the AC-1 (homogeneous) pattern was significantly detected in oral/nasal ulcers and non-scarring alopecia (both <i>p</i> < .001). Regarding the laboratory features, the AC-4/5 (fine or large speckled) patterns exhibited a predominant seen in autoimmune hemolytic anemia, leukopenia, thrombocytopenia, elevated ESR and CRP, hypocomplementemia, direct Coombs, anti-Smith (Sm), anti-SSA and SS-B, anti-ribonucleoprotein (RNP), anti-histone, anti-ribosomal P, lupus anticoagulant, anti-cardiolipin immunoglobulin (Ig)M/IgG, and anti-β2-glycoprotein IgM/IgG positivities (all <i>p</i> < .001). In contrast, the AC-1 (homogeneous) pattern was detected in anti-double-stranded (ds) DNA and anti-histone positivity (both <i>p</i> < .001).</p><p><strong>Conclusion: </strong>Our study showed that AC-4/5 and AC-1 patterns of ANA are frequently detected in many clinical and serological features of childhood-onset SLE patients. However, further studies are needed in larger populations to verify these results.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"71-78"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142739624","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}
引用次数: 0
Neonatal lupus erythematosus: 24 years of experience from a tertiary centre at Chandigarh, North India. 新生儿红斑狼疮:北印度昌迪加尔一家三级医疗中心 24 年的经验。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-12-15 DOI: 10.1177/09612033241308115
Rakesh Kumar Pilania, Abarna Thangaraj, Archan Sil, Manpreet Dhaliwal, Saniya Sharma, Ankur Kumar Jindal, Pandiarajan Vignesh, Ravinder Garg, Pankaj Aggarwal, Rupesh Kumar, Sanjeev Naganur, Amit Rawat, Deepti Suri
{"title":"Neonatal lupus erythematosus: 24 years of experience from a tertiary centre at Chandigarh, North India.","authors":"Rakesh Kumar Pilania, Abarna Thangaraj, Archan Sil, Manpreet Dhaliwal, Saniya Sharma, Ankur Kumar Jindal, Pandiarajan Vignesh, Ravinder Garg, Pankaj Aggarwal, Rupesh Kumar, Sanjeev Naganur, Amit Rawat, Deepti Suri","doi":"10.1177/09612033241308115","DOIUrl":"10.1177/09612033241308115","url":null,"abstract":"<p><strong>Objective: </strong>To study the clinical features and laboratory parameters of neonatal lupus erythematosus (NLE) from India.</p><p><strong>Patients and methods: </strong>We analyzed case records of children diagnosed with NLE in the Pediatric Rheumatology Clinic at tertiary care centre from North India during the period January 1999 - December 2023.</p><p><strong>Results: </strong>Twenty-four babies are diagnosed with NLE during the study period. Median age at diagnosis was 60 days with a female predisposition (Male to female- 1:2). Cutaneous manifestations were reported in 14 (58%) patients. Hepatomegaly was noted in 15 (62.5%), and splenomegaly in 2 (8%). Elevated transaminases were noted in 14 (58%) patients, and cholestatic jaundice in one. Hematological manifestations were noticed in 20 (83.3%), and neurological manifestations were noticed in 8 patients. Most non-cardiac manifestations were self-limiting. Intravenous immunoglobulin was used for phrenic nerve palsy and autoimmune hemolytic anemia. Oral corticosteroid was used in a patient with refractory cytopenia, and four patients required transfusions. Cardiac involvement was reported in 13 (54%) patients - 3rd-degree heart block in 9 patients, and 6 were managed with epicardial pacemaker insertion. One patient required pacemaker reimplantation due to infective endocarditis. Congenital hydrops was seen in 3 patients, and required respiratory support and recovery was uneventful.</p><p><strong>Conclusion: </strong>NLE is associated with significant morbidity. More than half had cardiac manifestation, of which 70% had 3rd-degree heart block requiring pacemaker insertion. Other rare clinical manifestations like phrenic nerve palsy and seizures are noticed in our cohort.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"102-107"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142829294","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}
引用次数: 0
A rare case of late-onset spondyloenchondrodysplasia with immune dysregulation presenting as adult-onset monogenic lupus. 一例罕见的晚发性脊柱间充质软骨发育不良伴免疫失调,表现为成人型单基因狼疮。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-11-19 DOI: 10.1177/09612033241301506
Esra Firat Senturk, Bilal Berke Ayvaz, Sinem Firtina, Serdal Ugurlu
{"title":"A rare case of late-onset spondyloenchondrodysplasia with immune dysregulation presenting as adult-onset monogenic lupus.","authors":"Esra Firat Senturk, Bilal Berke Ayvaz, Sinem Firtina, Serdal Ugurlu","doi":"10.1177/09612033241301506","DOIUrl":"10.1177/09612033241301506","url":null,"abstract":"<p><strong>Background: </strong>Spondyloenchondrodysplasia is classified as an interferonopathy resulting from recessive mutations in the <i>ACP5</i> gene and manifests with various clinical features, including distinctive skeletal dysplasia, neurological abnormalities, immune dysfunction resembling systemic lupus erythematosus (SLE) and Sjogren's syndrome. While SLE is typically considered multifactorial and more prevalent in adulthood, a subset of approximately 10%-25% of childhood cases arise from monogenic form. Among these, spondyloenchondrodysplasia accounts for only a rare fraction of monogenic lupus cases, with only 22 reported instances in the literature.</p><p><strong>Case report: </strong>This paper presents a new case of spondyloenchondrodysplasia-immune dysregulation (SPENCDI) in an adult patient born to nonconsanguineous parents. The patient was diagnosed with SPENCDI and exhibited immune neutropenia, anti-dsDNA positivity, platyspondyly, immune deficiency, and a homozygous variant (c.155 A > C, p. Lys52Thr) in the <i>ACP5</i> gene, previously classified as pathogenic. Notably, the patient achieved successful clinical management through the initiation of baricitinib treatment, a Janus kinase inhibitor.</p><p><strong>Conclusion: </strong>SPENCDI represents an uncommon cause of SLE in adulthood. Clinicians should be vigilant of underlying Mendelian inheritance when encountering patients with associated features. While treatments for both Mendelian and non-Mendelian SLE are similar, Janus kinase inhibitors like baricitinib show potential for managing interferon-signature monogenic SLE cases.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"108-114"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142668519","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}
引用次数: 0
Clinical features and two-year outcomes in systemic lupus erythematosus patients with heart failure and reduced, mid-range and preserved ejection fractions. 系统性红斑狼疮伴心力衰竭患者的临床特征和两年预后,并伴有射血分数降低、中程和保留。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-12-10 DOI: 10.1177/09612033241308105
Zhe Li, Shuhua Zhu, Wenjun Tang, Haitao Zhang, Weibo Le, Song Luo, Chen Zhou, Yang Wang, Shutian Xu, Weixin Hu, Shijun Li
{"title":"Clinical features and two-year outcomes in systemic lupus erythematosus patients with heart failure and reduced, mid-range and preserved ejection fractions.","authors":"Zhe Li, Shuhua Zhu, Wenjun Tang, Haitao Zhang, Weibo Le, Song Luo, Chen Zhou, Yang Wang, Shutian Xu, Weixin Hu, Shijun Li","doi":"10.1177/09612033241308105","DOIUrl":"10.1177/09612033241308105","url":null,"abstract":"<p><strong>Objective: </strong>We retrospectively analyzed the clinical features and prognosis of SLE patients with HF.</p><p><strong>Methods: </strong>Patients with SLE and HF who were hospitalized in Jinling Hospital from January 2013 to May 2021 and followed up for 2 years after discharge were included. Risk factors for death and ESKD were analyzed. According to cardiac ultrasound, patients were subdivided into the HFrEF, HFmrEF and HFpEF groups, and differences in clinical features and prognosis among the three groups were analyzed.</p><p><strong>Results: </strong>Among 376 SLE patients with HF, the distribution was 13.30% HFrEF, 14.89% HFmrEF, and 71.81% HFpEF. Median ages at SLE and HF diagnosis were 29.00 (21.25, 42.00) and 35.25 (27.29, 49.31) years, with a median SLE duration of 49 (7, 120) months. The 2-year overall and renal survival rates were 86.97% and 63.56%, respectively. Multivariate COX analysis identified age, NPSLE, blood NT-proBNP, CD20+ B cells, Alb, and UA as death risk factors, and Scr, PCT, CD20+ B cells, urine RBP, and right kidney size as ESKD risk factors. The 2-year survival rates were 70% for HFrEF, 82.14% for HFmrEF, and 91.11% for HFpEF; renal survival rates were 46%, 58.93%, and 67.78%, respectively. HFrEF had lower survival rates than HFpEF, while HFmrEF showed intermediate rates and clinical features, with some significantly different from HFpEF but not HFrEF. No significant differences in SLE remission or relapse rates were found among non-ESKD survivors.</p><p><strong>Conclusions: </strong>SLE patients with HF tend to have an early disease onset, high SLE activity and long course, with HFpEF being the predominant phenotype. HFrEF has a poorer prognosis compared to HFpEF, while HFmrEF has an intermediate prognosis and shares more clinical similarities with HFrEF.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"88-101"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142807246","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}
引用次数: 0
Understanding patient perspectives on health-related searches on the internet: Insights from an online survey of Korean patients with systemic lupus erythematosus. 了解患者对互联网上健康相关搜索的看法:韩国系统性红斑狼疮患者在线调查的启示。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-11-18 DOI: 10.1177/09612033241301172
Seung Min Jung, Sung-Hoon Park, Jisoo Lee, Yune-Jung Park, Seung Cheol Shim
{"title":"Understanding patient perspectives on health-related searches on the internet: Insights from an online survey of Korean patients with systemic lupus erythematosus.","authors":"Seung Min Jung, Sung-Hoon Park, Jisoo Lee, Yune-Jung Park, Seung Cheol Shim","doi":"10.1177/09612033241301172","DOIUrl":"10.1177/09612033241301172","url":null,"abstract":"<p><strong>Background: </strong>With the increasing prevalence of digital devices and internet access, digital resources have become essential for educating patients with chronic diseases. We explored the patient perspective on health-related internet searches among Korean patients with systemic lupus erythematosus (SLE).</p><p><strong>Methods: </strong>We collected data through a Google Survey from 344 SLE patients. The survey covered demographics, preferred digital devices and sources, and digital information content, and participants' views on digital resources. We analyzed patient characteristics associated with digital resource usage.</p><p><strong>Results: </strong>Of the 344 patients, 270 reported using the internet to acquire disease-related information, including the association between nutrition and SLE, general information on SLE, and coping strategies for SLE management. SLE-related searches on the internet were more common in patients younger than 40 years (<i>p</i> = 0.002), those with fewer than 15 years of disease duration (<i>p</i> < 0.001), and those with higher education levels (<i>p</i> = 0.022). Disease duration was independently associated with internet use. Patients reported that internet searches for information on SLE improved their understanding of the disease in 181 cases and motivated self-management in 166 cases. In addition, 98 patients found it helpful to make a shared decision with physicians.</p><p><strong>Conclusion: </strong>Health-related searches on the internet are widely used by SLE patients to gather comprehensive information on the disease and to address unmet needs. The positive impact of SLE-related internet searches on disease understanding and self-management emphasizes the importance of developing high-quality digital resources to improve patient education and self-care for the disease.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"39-46"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142668520","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}
引用次数: 0
SLE inflammatory musculoskeletal abnormalities, confirmed by MRI, show a specific profile with a worse health-related quality of life. 经磁共振成像确认的系统性红斑狼疮炎症性肌肉骨骼异常显示出一种特殊的特征,即与健康相关的生活质量较差。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-11-20 DOI: 10.1177/09612033241301515
Patricia Corzo, Anna Agustí Claramunt, Ivan Garcia-Duitama, Irene Carrión-Barberá, Salvatore Marsico, Xavier Duran Jordà, Jordi Monfort Faure, Tarek-Carlos Salman-Monte
{"title":"SLE inflammatory musculoskeletal abnormalities, confirmed by MRI, show a specific profile with a worse health-related quality of life.","authors":"Patricia Corzo, Anna Agustí Claramunt, Ivan Garcia-Duitama, Irene Carrión-Barberá, Salvatore Marsico, Xavier Duran Jordà, Jordi Monfort Faure, Tarek-Carlos Salman-Monte","doi":"10.1177/09612033241301515","DOIUrl":"10.1177/09612033241301515","url":null,"abstract":"<p><strong>Objectives: </strong>To determine if there is a clinicodemographic or serological profile associated with MRI-confirmed inflammatory musculoskeletal abnormalities in SLE patients. To investigate the relationship between these alterations and HRQoL.</p><p><strong>Methods: </strong>patients with SLE from our previous study in whom a wrist and hand MRI with contrast was performed were included. Sociodemographic, clinical, therapeutic, serological data and PROs were collected and correlated with MRI findings.</p><p><strong>Results: </strong>83 patients were analysed. Erosions and synovitis were more common in older patients (55 ± 12.61 vs 45.06 ± 12.18 years, <i>p</i> .001, 52.78 ± 12.99 vs 44.95 ± 12.49 years, <i>p</i> .011). Synovitis was less frequent in patients with nephritis (6.7% vs 24.3%, <i>p</i> .031). Treatment received showed some associations: patients with bone edema received more methotrexate (25% vs 6.3%, <i>p</i> .033), those with erosions and peritendonitis received less mycophenolic acid (5.6% vs 22.9%, <i>p</i> .034; 0% vs 12.8%, <i>p</i> .026). Peritendonitis correlated with higher SLEDAI-2K (7 ± 2.45 vs 3.64 ± 3.34, <i>p</i> .018).</p><p><strong>Worse haq: </strong>Patients with synovitis, tenosynovitis, peritendonitis and bone edema reported higher pain (6.03 ± 2.57 vs 4.26 ± 2.49, <i>p</i> .005; 6.56 ± 1.95 vs 4.76 ± 2.75, <i>p</i> .017; 8.80 ± 1.30 vs 4.95 ± 2.55, <i>p</i> .001; 6.47 ± 2.62 vs 4.83 ± 2.58, <i>p</i> .026, respectively). Patients with synovitis reported higher fatigue numerical values (2.32 ± 0.82 vs 1.91 ± 0.84, <i>p</i> .035), with tenosynovitis worse FSS-9 (61.50 ± 1.73 vs 45.70 ± 16.80, <i>p</i> .015), and with both synovitis and peritendonitis worse HAQ (1.14 ± 0.69 vs 0.75 ± 0.65, <i>p</i> .031; 1.69 ± 0.07 vs 0.90 ± 0.69, <i>p</i> .018).</p><p><strong>Conclusion: </strong>SLE patients with confirmed musculoskeletal alterations on MRI were generally older, less likely to have lupus nephritis, and received different treatments. They reported a worse HRQoL in terms of pain, fatigue and functional disability.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"10-17"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142676166","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}
引用次数: 0
The problem of pain in systemic lupus erythematosus: A comprehensive analysis of pain distribution using the CHOIR body map and PROMIS measures. 系统性红斑狼疮的疼痛问题:使用 CHOIR 身体图和 PROMIS 测量方法对疼痛分布进行综合分析。
IF 1.9 4区 医学
Lupus Pub Date : 2025-01-01 Epub Date: 2024-11-25 DOI: 10.1177/09612033241301176
Tiffany En Jiang, Sean Mackey, Beth D Darnall, Julia F Simard, Titilola Falasinnu
{"title":"The problem of pain in systemic lupus erythematosus: A comprehensive analysis of pain distribution using the CHOIR body map and PROMIS measures.","authors":"Tiffany En Jiang, Sean Mackey, Beth D Darnall, Julia F Simard, Titilola Falasinnu","doi":"10.1177/09612033241301176","DOIUrl":"10.1177/09612033241301176","url":null,"abstract":"<p><strong>Background: </strong>Our study investigates the associations between pain distribution, biopsychosocial factors, and Patient-Reported Outcomes Measurement Information System (PROMIS) measures in patients with systemic lupus erythematosus (SLE). Employing self-reported pain body maps, we aim to characterize the distribution of pain and its impact on biopsychosocial measures.</p><p><strong>Methods: </strong>We retrospectively analyzed the electronic health records (EHR) of 332 adult patients with SLE attending pain clinics at an academic medical center. The study included demographics, pain distribution assessed via self-reported body maps, and PROMIS assessments of biopsychosocial experiences. We used linear regression models adjusted for age and sex to investigate associations between pain distribution and PROMIS outcomes.</p><p><strong>Results: </strong>Men, on average, indicated pain in 3.2 regions, whereas women reported pain in 5.6 regions. Women predominantly highlighted the hip, buttock, and leg region, whereas men primarily emphasized the shoulder and arm region. We found a positive correlation between pain widespreadness and worse PROMIS measures, including pain interference, behavior, fatigue, depression, anxiety, sleep disturbance, and social isolation. Additionally, widespread pain was associated with lower physical function, emotional support, and satisfaction in roles and activities. Female patients reported higher levels of pain and PROMIS measures compared to males.</p><p><strong>Conclusion: </strong>Our findings highlight the multidimensional impact of pain on SLE patients' lives underscoring the need for holistic pain management approaches. The intricate associations between pain distribution and biopsychosocial factors emphasize the importance of considering spatial dimensions of pain in clinical interventions. Further research is warranted to explore effective interventions addressing psychosocial aspects of pain in SLE, aiming to enhance patient symptom management and quality of life.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"47-56"},"PeriodicalIF":1.9,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11663094/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142710470","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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