LupusPub Date : 2024-09-01Epub Date: 2024-07-23DOI: 10.1177/09612033241266990
Sana Chourabi, Sameh Sayhi, Selim Ben Ameur, Chadia Chourabi, Houaida Mahfoudhi, Wafa Fehri, Nadia Ben Abdelhafidh
{"title":"Cardiac involvement in systemic lupus erythematosus: Interest of 2D global longitudinal strain.","authors":"Sana Chourabi, Sameh Sayhi, Selim Ben Ameur, Chadia Chourabi, Houaida Mahfoudhi, Wafa Fehri, Nadia Ben Abdelhafidh","doi":"10.1177/09612033241266990","DOIUrl":"10.1177/09612033241266990","url":null,"abstract":"<p><strong>Background: </strong>Systemic lupus erythematosus (SLE) is a chronic multisystem autoimmune disease of undetermined etiology. Cardiac involvement is common in SLE and constitutes one of the main causes of mortality. More recently, new ultrasound imaging techniques, such as transthoracic ultrasound (TTE) with strain evaluation, have appeared and seem promising for the detection of cardiac involvement. The objective of our work was to study the frequency and characteristics of ultrasound abnormalities found in lupus patients and to study the benefit of ultrasound with global longitudinal strain (GLS) for early management.</p><p><strong>Methods: </strong>It was an observational study of patients followed for SLE at the internal medicine and cardiology department of the HMPIT for 6 months (May-November 2023). The definition of cardiac involvement was by ultrasound. All patients benefited from TTE coupled with 2D-strain. We divided the workforce into two groups: the first group (patients with heart disease) and the second group (patients without heart disease).</p><p><strong>Results: </strong>In a series of 40 lupus patients including 33 women and seven men, cardiac manifestations were reported in 60% of patients. In the first group, 29% had palpitations, 25% had chest pain, 67% had dyspnea, 37% had pericarditis, 8% had pulmonary arterial hypertension (PAH) and 12% had myocarditis. The comparative study showed that patients in the first group presented significantly more frequently with dyspnea (<i>p</i> = 0.02), chest pain (<i>p</i> = 0.03) and serositis (<i>p</i> = 0.01) compared to those in the second group. The mean left ventricular ejection fraction (LVEF) did not show a significant difference between the two groups. On the other hand, the average Global Longitudinal Strain (GLS) was significantly altered in the first group (<i>p</i> = 0.01). Furthermore, the frequency of pathological GLS was significantly higher in patients with lupus heart disease (<i>p</i> < 0.01).</p><p><strong>Conclusion: </strong>Cardiac involvement during SLE is a frequent and most often asymptomatic complication. A systematic search for this impairment using a high-performance echocardiography examination, namely the 2D GLS, is essential for early treatment.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"1100-1108"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141748519","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 : 2024-09-01Epub Date: 2024-07-24DOI: 10.1177/09612033241265545
Francesca S Cardwell, Alexandra O Kobza, Susan J Elliott, Paul S Gibson, Nancy Soliman, Leslie Skeith, Ann E Clarke, Megan Rw Barber
{"title":"A qualitative investigation of the experiences of patients living with antiphospholipid antibodies.","authors":"Francesca S Cardwell, Alexandra O Kobza, Susan J Elliott, Paul S Gibson, Nancy Soliman, Leslie Skeith, Ann E Clarke, Megan Rw Barber","doi":"10.1177/09612033241265545","DOIUrl":"10.1177/09612033241265545","url":null,"abstract":"<p><strong>Objective: </strong>Substantial morbidity and mortality affect those with antiphospholipid antibodies (aPLs) and antiphospholipid syndrome (APS), yet patient experiences remain poorly understood. This research investigated patient experiences of aPL/APS diagnosis; effects on daily life; and healthcare and treatment.</p><p><strong>Methods: </strong>Patients aged ≥18 years with APS per the Revised Sapporo criteria or with ≥1 positive aPL on ≥2 occasions were recruited from a Canadian multidisciplinary APS clinic to participate in semi-structured in-depth interviews. Interviews were conducted virtually and transcribed verbatim for subsequent thematic analysis.</p><p><strong>Results: </strong>Twenty-one patients with aPLs/APS participated; 95.2% were female, mean (SD) age was 45.6 (15.0) years. Most (71.4%) had APS, and 71.4% had aPLs/APS with SLE. Results are presented around patient experiences of aPL/APS diagnosis, effects on daily life, and healthcare and treatment. Participants described medical complications/physical symptoms and the healthcare, lifestyle, and emotional impacts experienced around the time of aPLs/APS diagnosis. In addition to the physical and psychosocial impacts of living with aPLs/APS, patients reported modified leisure activities, altered employment trajectories, and positive and negative impacts on relationships. Impacts on family planning were also a critical component of the aPL/APS lived experience; participants shared experiences of miscarriage, other pregnancy complications, and medication-related challenges (e.g., with low-molecular-weight heparin injections). Challenging aspects of aPL/APS healthcare and treatment were also discussed, particularly related to the lifestyle, physical, and emotional burden of medication use. Although a lack of resources was described, participants expressed trust in healthcare providers when making management decisions or when seeking information. Suggestions for resources included the need for additional medication-related information, examples to help contextualize management behaviours, and additional information for those with aPLs/APS without SLE.</p><p><strong>Conclusion: </strong>Patients highlighted how the diverse manifestations of aPLs/APS, accentuated by management-related challenges, impose considerable physical and psychosocial burdens. Results will inform the development of patient resources aligned with patient priorities.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"1043-1058"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141751960","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 : 2024-09-01Epub Date: 2024-07-22DOI: 10.1177/09612033241265975
Gülşah Kavrul Kayaalp, Deren Esencan, Vafa Guliyeva, Selen Duygu Arık, Şeyma Türkmen, Sezgin Şahin, Yelda Bilginer, Özgür Kasapçopur, Betül Sözeri, Seza Özen, Nuray Aktay Ayaz, Amr H Sawalha
{"title":"Childhood-onset systemic lupus erythematosus: A descriptive and comparative study of clinical, laboratory, and treatment characteristics in two populations.","authors":"Gülşah Kavrul Kayaalp, Deren Esencan, Vafa Guliyeva, Selen Duygu Arık, Şeyma Türkmen, Sezgin Şahin, Yelda Bilginer, Özgür Kasapçopur, Betül Sözeri, Seza Özen, Nuray Aktay Ayaz, Amr H Sawalha","doi":"10.1177/09612033241265975","DOIUrl":"10.1177/09612033241265975","url":null,"abstract":"<p><strong>Objective: </strong>The aim of this study was to characterize childhood-onset systemic lupus erythematosus (SLE) in two large cohorts from Turkey and the United States.</p><p><strong>Methods: </strong>Patients diagnosed with childhood-onset SLE who fulfilled the 1997 American College of Rheumatology classification criteria for SLE from four reference centers in Turkey and the University of Pittsburgh School of Medicine in the United States were included in this study. A comparative analysis was conducted to evaluate the similarities and differences in clinical and laboratory features, damage accrual, and treatment experiences between the two populations.</p><p><strong>Results: </strong>A total of 174 patients with childhood-onset SLE were included in this study (108 patients from Turkey and 66 patients from the United States). The female-to-male ratio was similar between the two cohorts (∼3:1, <i>p</i> = .73). The median age at diagnosis was 11.67 years (2.19-17.93) in the Turkish cohort and 13.68 years (2.74-17.93) in the U.S. cohort (<i>p</i> < .001). Photosensitivity (45.4% and 21.2%; <i>p</i> = .007) and renal involvement (41.7% and 36.4%; <i>p</i> = .045) were higher in the Turkish cohort. Anti-Ro/SSA (34.8% and 15.7%; <i>p</i> < .001), anti-Sm (59.1% and 19.4%; <i>p</i> < .001), and anti-RNP (47.0% and 14.8%; <i>p</i> < .001) positivity was more frequent in the U.S. cohort. Current use of rituximab (37.9% and 1.9%; <i>p</i> < .001) and belimumab (19.7% and 0%; <i>p</i> < .001) was more prevalent in the U.S. cohort, while the use of cyclophosphamide (often according to the low dose Euro-Lupus protocol) throughout the disease course (24.1% and 4.5%; <i>p</i> < .001) was more frequent in the Turkish cohort. SLICC/ACR Damage Index scores were not different between the two cohorts.</p><p><strong>Conclusion: </strong>This study provides detailed clinical and laboratory features of childhood-onset SLE in two independent and geographically divergent cohorts. Our findings suggest an earlier age of disease onset and a higher prevalence of kidney involvement in Turkish patients. Differences in treatment approaches were also noted. However, damage accrual related to SLE does not appear to be different between the two patient populations.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"1130-1138"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11405132/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141734542","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}
LupusPub Date : 2024-09-01Epub Date: 2024-07-20DOI: 10.1177/09612033241266093
Eneida Machado Alves, Vanessa Fonseca, Carlos Antonio Moura, Isabela S Oliveira, Mittermayer B Santiago
{"title":"Bilateral outer foveal microdefect in a patient with systemic lupus erythematosus using hydroxychloroquine - A case report.","authors":"Eneida Machado Alves, Vanessa Fonseca, Carlos Antonio Moura, Isabela S Oliveira, Mittermayer B Santiago","doi":"10.1177/09612033241266093","DOIUrl":"10.1177/09612033241266093","url":null,"abstract":"<p><strong>Introduction: </strong>The association of outer foveal microdefect and LES or hydroxychloroquine use has not been established in current literature.</p><p><strong>Case report: </strong>We present the first reported case of bilateral outer foveal microdefect ina a patient with systemic lúpus erythematosus using hydroxycloroquine.</p><p><strong>Discussion/conclusion: </strong>While it is not possible to definitively attribute the described findings in our patient to HCQ use, it is important to be aware of the possibility that the outer foveal microdefect may be caused by this medication. Therefore, patients on chronic HCQ therapy should be informed about the risk of potential visual adverse effects, so that appropriate interventions can be implemented if necessary.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"1145-1147"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141731247","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 : 2024-09-01Epub Date: 2024-07-21DOI: 10.1177/09612033241266987
Raquel Faria, Daniel Guimarães de Oliveira, Rute Alves, Fátima Farinha, Paulo Pinho Costa, Carlos Vasconcelos, Margarida Figueiredo-Braga
{"title":"Psychological impact of life events in systemic lupus erythematosus patients - Differences between flares and remission.","authors":"Raquel Faria, Daniel Guimarães de Oliveira, Rute Alves, Fátima Farinha, Paulo Pinho Costa, Carlos Vasconcelos, Margarida Figueiredo-Braga","doi":"10.1177/09612033241266987","DOIUrl":"10.1177/09612033241266987","url":null,"abstract":"<p><strong>Background: </strong>Stress has been linked to worsening symptoms and increased disease activity in patients with Systemic lupus erythematosus (SLE). Life-events are individual stress points, and there is conflicting evidence regarding their role in SLE activity and disease perception.</p><p><strong>Methods: </strong>Adult SLE patients were recruited for the study. Clinical and laboratory features of SLE were recorded, and previous diagnosis of anxiety or depression were retrieved from patients' electronic charts. Flares were defined by the Systemic Lupus Erythematosus Disease Activity (SLEDAI) flare Index, and flares during the previous year were documented. During a routine visit, they completed validated Portuguese translations of the 10-item Perceived Stress Scale (PSS-10), Hospital Anxiety and Depression Scale (HADS) and Life Experience Survey (LES) for the previous year.</p><p><strong>Results: </strong>A total of 47 female SLE patients were recruited. Ten patients (21.3%) had experienced recent flares. Patients with recent flares reported fewer life events, with lower positive, negative, and total weightings sums compared to those without recent flares. Although 42.2% of patients perceived pathological levels of stress in the previous month, 48.9% had anxiety symptoms, and 34% were at high risk for an anxiety disorder, these psychometric measures did not differ significantly between the recent flare and no-flare groups.</p><p><strong>Conclusions: </strong>There is a high prevalence of pathological levels of stress among SLE patients. SLE patients with recent flares report less psychological impact from life events, both positive and negative, independent of other psychological or pharmacological factors.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"1139-1144"},"PeriodicalIF":1.9,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141734543","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 : 2024-08-01Epub Date: 2024-06-03DOI: 10.1177/09612033241258189
McKenzie Vater, Alaina Davis, Sarah Jaser
{"title":"Evaluation of health literacy and its association with medication adherence and quality of life in childhood-onset systemic lupus erythematosus.","authors":"McKenzie Vater, Alaina Davis, Sarah Jaser","doi":"10.1177/09612033241258189","DOIUrl":"10.1177/09612033241258189","url":null,"abstract":"<p><strong>Objective: </strong>Little is known about health literacy in childhood-onset systemic lupus erythematosus (cSLE) and how health literacy relates to medication adherence and psychosocial outcomes in this high-risk population. The objective of this study was to evaluate health literacy in adolescents and young adults with cSLE and its association with medication adherence and quality of life.</p><p><strong>Methods: </strong>Youth 10-24 years with cSLE (<i>n</i> = 48) completed the Brief Healthy Literacy Screen (BHLS) and the Newest Vital Sign (NVS) to assess health literacy. Participants also completed validated measures of medication adherence and quality of life. Descriptive analyses were used to determine levels of health literacy. Bivariate correlations were used to evaluate associations between measures of health literacy with adherence and quality of life. A multivariable regression analyses was used to determine if health literacy was a significant predictor of adherence or quality of life, after adjusting for age, sex, race, and household income.</p><p><strong>Results: </strong>Inadequate health literacy was common in this population, with 67% of youth categorized as having inadequate health literacy by the BHLS and 42% by the NVS. Higher medication adherence was associated with a higher BHLS score (r=.36, <i>p</i> = .017). BHLS was also significantly associated with better quality of life (r = 0.31, <i>p</i> = .034).</p><p><strong>Conclusion: </strong>Inadequate health literacy is prevalent among youth with cSLE. Higher health literacy is associated with higher medication adherence and better quality of life, suggesting that attention to health literacy could improve outcomes for this vulnerable population.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"1004-1011"},"PeriodicalIF":1.9,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295410/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141237608","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}
{"title":"Belimumab-induced periungual pyogenic granulomas: A case report.","authors":"Cecilia Beatrice Chighizola, Ilaria Suardi, Achille Marino, Maurizio Gattinara, Stefania Costi, Angelo Cattaneo, Maria Gerosa, Roberto Caporali","doi":"10.1177/09612033241260180","DOIUrl":"10.1177/09612033241260180","url":null,"abstract":"<p><p>Pyogenic granuloma (PG) is a benign vascular neoformation, presenting as a painful red nodule on the skin, mucosa or nail apparatus. It is usually related to local complications such as bleedings and superinfections. The etiology of PG remains still unclear, and several triggers can lead to its formation. In case of multiple lesions, systemic conditions and drugs remain the main causes. Antineoplastic treatments, retinoids, antiretrovirals, hormones and anticonvulsants are frequently implicated in PG formation. In literature, PG has been rarely described in the course of biological treatment due to rheumatological disease. The present case report describes the development of polydactolous PGs in a 21-year-old woman with juvenile systemic lupus erythematosus (jSLE) during treatment with belimumab, a monoclonal antibody directed against BlyS. The clinical presentation, in particular the timing and the multiplicity of the lesions, and the improvement after belimumab discontinuation allowed us to consider PG as drug-induced. This case highlights the importance of considering PG as a potential complication of rheumatologic treatments.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"1017-1021"},"PeriodicalIF":1.9,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141300982","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":"The additional role of anti-nucleosome antibodies in the prediction of renal damage in systemic lupus erythematosus based on CSTAR (XXV).","authors":"Yufang Ding, Yangzhong Zhou, Jiuliang Zhao, Chanyuan Wu, Shangzhu Zhang, Nan Jiang, Junyan Qian, Li Zhang, Jing Li, Dong Xu, Xiaomei Leng, Qian Wang, Xinping Tian, Mengtao Li, Xiaofeng Zeng","doi":"10.1177/09612033241260231","DOIUrl":"10.1177/09612033241260231","url":null,"abstract":"<p><strong>Objectives: </strong>The predominant determinant of an unfavorable prognosis among Systemic Lupus Erythematosus (SLE) patients resides in the irreversible organ damage. This prospective cohort study aimed to identify the additional value of anti-nucleosome antibodies on organ damage accumulation in SLE patients.</p><p><strong>Methods: </strong>Based on the Chinese SLE Treatment and Research group (CSTAR) registry, demographic characteristics, autoantibodies profiles, and clinical manifestations were collected at baseline. Follow-up data were collected by reviewing clinical records.</p><p><strong>Results: </strong>Of 2481 SLE patients with full follow-up data, 663 (26.7%) were anti-nucleosome antibodies positive and 1668 (68.0%) were anti-dsDNA antibodies positive. 764 (30.8%) patients developed new organ damage during a mean follow-up of 4.31 ± 2.60 years. At baseline, patients with positive anti-nucleosome antibodies have a higher rate of lupus nephritis (50.7% vs 36.2%, <i>p</i> < .001). According to the multivariable Cox regression analysis, both anti-nucleosome (HR = 1.30, 95% CI, 1.09-1.54, <i>p</i> < .001) and anti-dsDNA antibodies (HR=1.68, 95% CI, 1.38-2.05, <i>p</i> < .001) were associated with organ damage accumulation. Anti-nucleosome (HR = 2.51, 95% CI, 1.81-3.46, <i>p</i> < .001) and anti-dsDNA antibodies (HR = 1.69, 95% CI, 1.39-2.06, <i>p</i> < .001) were independent predictors for renal damage. Furthermore, the combination of the two antibodies can provide more accurate information about renal damage in overall SLE patients (HR = 3.19, 95% CI, 2.49-4.10, <i>p</i> < .001) and patients with lupus nephritis at baseline (HR = 2.86, 95% CI, 2.29-3.57, <i>p</i> < .001).</p><p><strong>Conclusion: </strong>Besides anti-dsDNA antibodies, anti-nucleosome antibodies can also provide information about organ damage accrual during follow-up. The ability of co-positivity of anti-nucleosome and anti-dsDNA antibodies in predicting renal damage may lead to additional benefits in the follow-up of these patients.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"986-997"},"PeriodicalIF":1.9,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141296375","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 : 2024-08-01Epub Date: 2024-06-20DOI: 10.1177/09612033241261746
Anne Troldborg, Lauren Remkus, Daniel Eek, Bent Deleuran
{"title":"Anifrolumab treatment improves patient-reported quality of life and decreases disease activity and corticosteroid use in patients with systemic lupus erythematosus: A qualitative study in Denmark.","authors":"Anne Troldborg, Lauren Remkus, Daniel Eek, Bent Deleuran","doi":"10.1177/09612033241261746","DOIUrl":"10.1177/09612033241261746","url":null,"abstract":"<p><p>Anifrolumab is a new therapeutic approach for individuals with systemic lupus erythematosus (SLE) directed at blocking the type 1 interferon pathway. Despite the expanding body of literature on Anifrolumab, an essential aspect remains absent: the subjective patient experience of treatment effects and implications on patients' health-related quality of life (HRQoL). The present study aimed to fill this void by elucidating the nuanced perspectives of SLE patients receiving Anifrolumab treatment by conducting qualitative in-depth interviews (IDIs). SLE patients at Aarhus University Hospital who had received at least three infusions of Anifrolumab were approached for inclusion in the study, which comprised two main elements: (1) qualitative IDIs and (2) collection of patient data from electronic medical records (EMRs). The IDIs were semi-structured and based on a discussion guide that included open-ended and close-ended questions. Verbatim transcripts were coded and analysed using qualitative software to understand concepts important to patients and to understand patients' own experiences before and after Anifrolumab therapy. A clinical chart review was conducted using EMR data at baseline, 3 months, and 6 months after Anifrolumab initiation. IDIs were completed with 14 patients, and EMR data was collected from 16 patients (treatment days range: 62-474). Of the 23 symptoms spontaneously reported by patients prior to Anifrolumab treatment, fatigue, joint pain, sun sensitivity, joint stiffness, skin rashes, and hair loss were the most common. Most symptoms improved, and none worsened during treatment. Patients reported significant impacts of disease on daily life before treatment: day-to-day activities, social life, emotional aspects, physical activity, concentration/memory, work/employment, and family/romantic relationships. Patients reported improvements in all aspects after treatment but were still impacted. From the EMR data, we observed a fall in disease activity after treatment initiation with a concomitant reduction in the use of corticosteroids. This study provides valuable insights into the subjective experiences of SLE patients treated with Anifrolumab, and the findings collectively contribute to a comprehensive understanding of the treatment's efficacy from the patients' perspective and its tangible effects on both subjective and objective parameters in SLE patients.</p>","PeriodicalId":18044,"journal":{"name":"Lupus","volume":" ","pages":"962-973"},"PeriodicalIF":1.9,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11348625/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141432258","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}