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Cluster Analysis To Explore Clinical Subphenotypes Of Eosinophilic Granulomatosis With Polyangiitis (Churg-Strauss). 聚类分析探讨嗜酸性肉芽肿病合并多血管炎的临床亚表型。
Q2 Medicine Pub Date : 2023-09-01 DOI: 10.3899/jrheum.2022-0325
Emma Rubenstein, C. Maldini, A. Vaglio, F. Bello, J. Bremer, F. Moosig, P. Bottero, Alberto Pesci, R. Sinico, J. Grosskreutz, Claudia Feder, D. Saadoun, Giorgio Trivioli, F. Maritati, B. Rewerska, W. Szczeklik, P. Fraticelli, Giuseppe Guida, G. Gregorini, G. Moroncini, B. Hellmich, J. Zwerina, Matthieu Resche-Rigon, G. Emmi, T. Neumann, A. Mahr
OBJECTIVEPrevious studies suggested that distinct phenotypes of eosinophilic granulomatosis with polyangiitis (EGPA) could be determined by presence or absence of antineutrophil cytoplasmic antibodies (ANCA), reflecting predominant vasculitic or eosinophilic processes, respectively. This study explored whether ANCA-based clusters or other clusters can be identified in EGPA.METHODSThis study used standardized data of 15 European centers for patients with EGPA fulfilling widely accepted classification criteria. We used multiple correspondence analysis, hierarchical cluster analysis, and a decision tree model. The main model included 10 clinical variables (musculoskeletal, mucocutaneous, ophthalmological, ENT, cardiovascular, pulmonary, gastrointestinal, renal, central or peripheral neurological involvement); a second model also included ANCA results.RESULTSThe analyses included 489 patients diagnosed in 1984-2015. ANCA were detected in 37.2% of patients, mostly P-ANCA (85.4%) and/or anti-myeloperoxidase (87.0%). Compared with ANCA-negative patients, those with ANCA had more renal (P<0.001) and peripheral neurological involvement (P=0.04), fewer cardiovascular signs (P<0.001) and fewer biopsies with eosinophilic tissue infiltrates (P=0.001). The cluster analyses generated four (model without ANCA) and five clusters (model with ANCA). Both models identified three identical clusters of 34, 39 and 40 patients according to the presence or absence of ENT, CNS and ophthalmological involvement. Peripheral neurological and cardiovascular involvement were not predictive characteristics.CONCLUSIONAlthough reinforcing the known association of ANCA status with clinical manifestations, cluster analysis does not support a complete separation of EGPA in ANCA-positive and -negative subsets. Collectively, these data indicate that EGPA should be regarded as a phenotypic spectrum rather than a dichotomous disease.
目的以前的研究表明,嗜酸性肉芽肿病合并多血管炎(EGPA)的不同表型可以通过抗中性粒细胞胞浆抗体(ANCA)的存在或不存在来确定,分别反映了主要的血管增生过程或嗜酸性过程。本研究探讨了在EGPA中是否可以识别基于anca的簇或其他簇。方法本研究采用欧洲15个EGPA中心的标准化数据,这些数据符合广泛接受的分类标准。我们使用了多重对应分析、层次聚类分析和决策树模型。主要模型包括10个临床变量(肌肉骨骼、粘膜皮肤、眼科、耳鼻喉科、心血管、肺部、胃肠道、肾脏、中枢或周围神经受累);第二个模型也包括了ANCA的结果。结果纳入1984-2015年诊断的489例患者。37.2%的患者检测到ANCA,主要是P-ANCA(85.4%)和/或抗髓过氧化物酶(87.0%)。与ANCA阴性患者相比,ANCA患者有更多的肾脏(P<0.001)和周围神经受累(P=0.04),更少的心血管征象(P<0.001)和更少的嗜酸性组织浸润活检(P=0.001)。聚类分析产生了4个(没有ANCA的模型)和5个(有ANCA的模型)。根据耳鼻喉科、中枢神经系统和眼科的受累与否,两种模型分别确定了34、39和40个相同的患者群。外周神经系统和心血管受累不是预测特征。结论虽然强化了已知的ANCA状态与临床表现的关联,但聚类分析并不支持EGPA在ANCA阳性和阴性亚群中的完全分离。总的来说,这些数据表明EGPA应被视为一种表型谱,而不是一种二分法疾病。
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引用次数: 0
Feasibility of Conducting Comparative Effectiveness Research and Validation of a Clinical Disease Activity Score for Chronic Nonbacterial Osteomyelitis 慢性非细菌性骨髓炎临床疾病活动性评分进行比较疗效研究和验证的可行性
Q2 Medicine Pub Date : 2022-10-05 DOI: 10.1101/2022.10.03.22280351
Eveline Y. Wu, M. Oliver, Joshua Scheck, S. Lapidus, U. Akca, S. Yasin, S. Stern, A. Insalaco, M. Pardeo, Gabriele Simonini, E. Marrani, Xing Wang, Bin Huang, L. Kovalick, Natalie Rosenwasser, Gabriel Casselman, Adriel Liau, Yurong Shao, Claire Yang, D. M. Mosa, Lori B. Tucker, H. Girschick, R. Laxer, J. Akikusa, C. Hedrich, K. Onel, F. Dedeoğlu, M. Twilt, P. Ferguson, Seza Ozen, Yongdong Zhao
Objective Prospective comparative effectiveness research (CER) in chronic nonbacterial osteomyelitis (CNO) is lacking. Our objectives were to (1) determine the use and safety of each consensus treatment plan (CTP) regimen for CNO, (2) assess the feasibility of using the Chronic Nonbacterial Osteomyelitis International Registry (CHOIR) data for CER, and (3) develop and validate a CNO clinical disease activity score (CDAS) using CHOIR. Methods Consenting children or young adults with CNO were enrolled into CHOIR. Demographic, clinical, and imaging data were prospectively collected. The CNO CDAS was developed through a Delphi survey and nominal group technique. External validation surveys were administered to CHOIR participants. Results One hundred forty (78.2%) CHOIR participants enrolled between August 2018 and September 2020 received at least 1 CTP regimen. Baseline characteristics from different CTP groups were well matched. Patient pain, patient global assessment, and clinical CNO lesion count were key variables included in the CNO CDAS. The CDAS showed a strong correlation with patient/parent report of difficulty using a limb, back, or jaw and patient/parent report of disease severity, but a weak correlation with patient/parent report of fatigue, sadness, and worry. The change in CDAS was significant in patients reporting disease worsening or improvement (P < 0.001). The CDAS significantly decreased after initiating second-line treatments from median 12.0 (IQR 8.0-15.5) to 5.0 (IQR 3.0-12.0; P = 0.002). Although second-line treatments were well tolerated, psoriasis was the most common adverse event. Conclusion The CNO CDAS was developed and validated for disease monitoring and assessment of treatment effectiveness. CHOIR provided a comprehensive framework for future CER.
目的缺乏慢性非细菌性骨髓炎(CNO)的前瞻性比较疗效研究。我们的目标是:(1)确定每种共识治疗方案(CTP)治疗CNO的使用和安全性,(2)评估使用慢性非细菌性骨髓炎国际登记(CHOIR)数据治疗CER的可行性,以及(3)使用CHOIR开发和验证CNO临床疾病活动性评分(CDAS)。方法将自愿接受CNO的儿童或青年纳入CHOIR。前瞻性地收集人口统计学、临床和影像学资料。CNO CDAS是通过德尔菲调查和名义群技术开发的。对CHOIR参与者进行外部验证调查。结果2018年8月至2020年9月期间入组的140名CHOIR参与者(78.2%)接受了至少1个CTP方案。不同CTP组的基线特征匹配良好。患者疼痛、患者整体评估和临床CNO病变计数是CNO CDAS的关键变量。CDAS与患者/家长报告的使用肢体、背部或下颌困难和患者/家长报告的疾病严重程度有很强的相关性,但与患者/家长报告的疲劳、悲伤和担忧有较弱的相关性。在报告疾病恶化或改善的患者中,CDAS的变化是显著的(P < 0.001)。开始二线治疗后,CDAS从中位数12.0 (IQR 8.0-15.5)显著下降到5.0 (IQR 3.0-12.0;P = 0.002)。虽然二线治疗耐受性良好,但牛皮癣是最常见的不良事件。结论CNO CDAS可用于疾病监测和治疗效果评估。CHOIR为未来的CER提供了一个全面的框架。
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引用次数: 1
Febuxostat Use and Safety in Patients With Hyperuricemia 非布司他在高尿酸血症患者中的使用和安全性
Q2 Medicine Pub Date : 2022-06-15 DOI: 10.3899/jrheum.220147
T. Kawada
I read the paper by Deng et al,1 in which the authors conducted a metaanalysis to evaluate whether febuxostat use increased the risk of developing cardiovascular (CV) events, cardiac death, and all-cause mortality. The adjusted relative risk (RR) of febuxostat use for all-cause mortality was 0.87 (95% CI 0.57-1.32).
我阅读了Deng等人的论文,其中作者进行了一项荟萃分析,以评估非布司他是否会增加发生心血管事件、心源性死亡和全因死亡率的风险。非布司他对全因死亡率的校正相对危险度(RR)为0.87 (95% CI 0.57-1.32)。
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引用次数: 0
Dr. Deng et al reply 邓博士等人回复
Q2 Medicine Pub Date : 2022-06-15 DOI: 10.3899/jrheum.220179
Hao Deng, X. Yang, H. Jin
We sincerely appreciate Dr. Kawada's comments in response to our metaanalysis.1 We agree with most of these opinions and would like to clarify our views here.
我们真诚地感谢Kawada博士对我们荟萃分析的评论我们同意大部分观点,在此澄清我们的观点。
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引用次数: 0
The Patient Experience of Drug Side Effects in Rheumatoid Arthritis: Intriguing Data From an Exploratory Online Survey 类风湿关节炎患者对药物副作用的体验:一项探索性在线调查的有趣数据
Q2 Medicine Pub Date : 2022-06-15 DOI: 10.3899/jrheum.220412
John M. Davis
Understanding adverse events (AEs) of disease-modifying antirheumatic drugs (DMARDs) for treatment of rheumatoid arthritis (RA) is critical to both patients and clinicians. AEs-"side effects" from the patient perspective-contribute significantly to patients' disease experience by interfering with activities of daily living and quality of life (QOL).1.
了解改善疾病的抗风湿药物(DMARDs)治疗类风湿性关节炎(RA)的不良事件(ae)对患者和临床医生都至关重要。ae——从患者的角度来看的“副作用”——通过干扰日常生活活动和生活质量(QOL),对患者的疾病经历有重要影响。
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引用次数: 2
The Association of Index-to-Ring Finger Ratio With Trapeziometacarpal Joint Osteoarthritis in an Elderly Korean Population 韩国老年人食指与无名指比例与腕关节骨关节炎的关系
Q2 Medicine Pub Date : 2022-06-15 DOI: 10.3899/jrheum.211355
J. Hwang, Sanghoon Lee, J. Shin, Ki Woong Kim, H. Gong
Objective Index-to-ring finger ratio (IRFR) has been reported to be associated with joint osteoarthritis (OA). We aimed to evaluate the association between IRFR and trapeziometacarpal joint (TMCJ) OA in an elderly Korean population. Methods A population-based sample included 604 participants with a mean age of 74.8 years. IRFR was radiographically measured by the ratio of the length of the right second to fourth phalangeal bones (“phalangeal IRFR”) and metacarpal bones (“metacarpal IRFR”), and was visually classified as either type 1 (index finger longer than or equal to ring finger) or type 2 (index finger shorter than ring finger). Odds ratios (ORs) for the presence of OA (Kellgren-Lawrence [KL] grade > 1) and for severe OA (KL grade > 2) were analyzed using logistic regression. Results The phalangeal IRFR averaged 91.3%, the metacarpal IRFR 116.7%, and 304 out of 604 participants (50.3%) had type 2 IRFR. We found TMCJ OA in 112 participants (18.5%), and severe TMCJ OA in 33 participants (5.5%). Presence of TMCJ OA was significantly associated with age (OR 1.04; 95% CI 1.01-1.06) and metacarpal IRFR (OR 0.94; 95% CI 0.88-0.99), and severe TMCJ OA with age (OR 1.08; 95% CI 1.03-1.12) and type 2 IRFR (OR 3.07; 95% CI 1.13-8.33). Conclusion Radiographic IRFR, specifically metacarpal IRFR, was associated with the presence of TMCJ OA, and visual IRFR with severe TMCJ OA in both elderly Korean men and women. The results of this study suggest that IRFR might serve as an easily measurable biomarker to identify patients vulnerable to TMCJ OA.
目的研究指指比(IRFR)与关节骨性关节炎(OA)的关系。我们的目的是评估韩国老年人IRFR与TMCJ骨性关节炎之间的关系。方法以人群为基础的样本包括604名参与者,平均年龄为74.8岁。IRFR通过放射学测量右手第二指骨与第四指骨(“指骨IRFR”)和掌骨(“掌骨IRFR”)的长度之比,并在视觉上分为1型(食指长于或等于无名指)或2型(食指短于无名指)。采用logistic回归分析存在OA (Kellgren-Lawrence [KL]分级> 1)和严重OA (KL分级> 2)的优势比(ORs)。结果604例患者中,指骨IRFR平均为91.3%,掌骨IRFR平均为116.7%,304例(50.3%)为2型IRFR。我们发现112名参与者(18.5%)患有TMCJ性关节炎,33名参与者(5.5%)患有重度TMCJ性关节炎。tmcjoa的存在与年龄显著相关(OR 1.04;95% CI 1.01-1.06)和掌骨IRFR (OR 0.94;95% CI 0.88-0.99),严重TMCJ关节炎随年龄增长(OR 1.08;95% CI 1.03-1.12)和2型IRFR (OR 3.07;95% ci 1.13-8.33)。结论影像学IRFR,特别是掌骨IRFR,与TMCJ型骨性关节炎的存在有关,在韩国老年男性和女性中,视觉IRFR与严重TMCJ型骨性关节炎有关。本研究结果表明,IRFR可能作为一种易于测量的生物标志物,用于识别易患TMCJ OA的患者。
{"title":"The Association of Index-to-Ring Finger Ratio With Trapeziometacarpal Joint Osteoarthritis in an Elderly Korean Population","authors":"J. Hwang, Sanghoon Lee, J. Shin, Ki Woong Kim, H. Gong","doi":"10.3899/jrheum.211355","DOIUrl":"https://doi.org/10.3899/jrheum.211355","url":null,"abstract":"Objective Index-to-ring finger ratio (IRFR) has been reported to be associated with joint osteoarthritis (OA). We aimed to evaluate the association between IRFR and trapeziometacarpal joint (TMCJ) OA in an elderly Korean population. Methods A population-based sample included 604 participants with a mean age of 74.8 years. IRFR was radiographically measured by the ratio of the length of the right second to fourth phalangeal bones (“phalangeal IRFR”) and metacarpal bones (“metacarpal IRFR”), and was visually classified as either type 1 (index finger longer than or equal to ring finger) or type 2 (index finger shorter than ring finger). Odds ratios (ORs) for the presence of OA (Kellgren-Lawrence [KL] grade > 1) and for severe OA (KL grade > 2) were analyzed using logistic regression. Results The phalangeal IRFR averaged 91.3%, the metacarpal IRFR 116.7%, and 304 out of 604 participants (50.3%) had type 2 IRFR. We found TMCJ OA in 112 participants (18.5%), and severe TMCJ OA in 33 participants (5.5%). Presence of TMCJ OA was significantly associated with age (OR 1.04; 95% CI 1.01-1.06) and metacarpal IRFR (OR 0.94; 95% CI 0.88-0.99), and severe TMCJ OA with age (OR 1.08; 95% CI 1.03-1.12) and type 2 IRFR (OR 3.07; 95% CI 1.13-8.33). Conclusion Radiographic IRFR, specifically metacarpal IRFR, was associated with the presence of TMCJ OA, and visual IRFR with severe TMCJ OA in both elderly Korean men and women. The results of this study suggest that IRFR might serve as an easily measurable biomarker to identify patients vulnerable to TMCJ OA.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"53 1","pages":"1152 - 1157"},"PeriodicalIF":0.0,"publicationDate":"2022-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"90201892","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Long-term Behavioral Changes During the COVID-19 Pandemic and Impact of Vaccination in Patients With Inflammatory Rheumatic Diseases COVID-19大流行期间炎症性风湿病患者的长期行为变化及疫苗接种的影响
Q2 Medicine Pub Date : 2022-06-15 DOI: 10.3899/jrheum.211280
B. Glintborg, D. Jensen, L. Terslev, O. Hendricks, M. Østergaard, S. Rasmussen, M. P. Jensen, T. Adelsten, A. Colic, K. Danebod, M. Kildemand, A. Loft, H. Munk, J. K. Pedersen, R. Østgård, C. M. Sørensen, N. Krogh, J. Agerbo, C. Ziegler, M. Hetland
Objective To explore anxiety and self-isolation in patients with inflammatory rheumatic disease (IRD)15 months into the coronavirus disease 2019 (COVID-19) pandemic, including attitudes toward and effects of SARS-CoV-2 vaccination. Methods A nationwide online survey was conducted at 3 timepoints: May 2020, November 2020, and May 2021. Patients with IRD followed in the Danish Rheumatology Quality Registry (DANBIO) were asked about the effects of the pandemic, including SARS-CoV-2 infection and their behavior, anxiety, and concerns. The May 2021 survey included attitudes toward SARS-CoV-2 and influenza vaccination. Characteristics associated with self-isolation in May 2021 were explored with adjusted logistic regression analyses that included patient characteristics and SARS-CoV-2 vaccination status. Results Respondents to surveys 1, 2, and 3 included 12,789; 14,755; and 13,921 patients, respectively; 64% had rheumatoid arthritis and 63% were female. Anxiety and concerns were highest in May 2020 and decreased to stable levels in November 2020 and May 2021; 86%, 50%, and 52% of respondents reported self-isolation, respectively. In May 2021, 4% of respondents self-reported previous SARS-CoV-2 infection. The SARS-CoV-2 vaccine acceptance rate was 86%, and the proportion of patients vaccinated against influenza had increased from 50% in winter 2019-2020 to 64% in winter 2020-2021. The proportion of patients with anxiety appeared similar among those vaccinated and unvaccinated against SARS-CoV-2. In multivariable analyses, being unvaccinated, female gender, receiving biologic drugs, and poor quality of life were independently associated with self-isolation. Conclusion Levels of anxiety and self-isolation decreased after the initial lockdown period in patients with IRD. Half of the patients reported self-isolation in May 2021, a phase that included widespread reopening of society and large-scale vaccination. The lack of prepandemic data prevented a full understanding of the long-term effects of the pandemic on anxiety and self-isolation in patients with IRD.
目的了解2019冠状病毒病(COVID-19)大流行前15个月炎症性风湿病(IRD)患者的焦虑和自我隔离情况,包括对SARS-CoV-2疫苗接种的态度和效果。方法在2020年5月、2020年11月和2021年5月3个时间点进行全国范围内的在线调查。在丹麦风湿病质量登记处(DANBIO)随访的IRD患者被问及大流行的影响,包括SARS-CoV-2感染及其行为、焦虑和担忧。2021年5月的调查包括对SARS-CoV-2和流感疫苗接种的态度。通过调整后的logistic回归分析,探讨了2021年5月与自我隔离相关的特征,包括患者特征和SARS-CoV-2疫苗接种状况。结果调查1、2、3的调查对象为12789人;14755;分别为13921例;其中64%患有类风湿关节炎,63%为女性。焦虑和担忧在2020年5月最高,在2020年11月和2021年5月降至稳定水平;86%、50%和52%的受访者分别报告了自我隔离。2021年5月,4%的受访者自我报告以前感染过SARS-CoV-2。SARS-CoV-2疫苗接种率为86%,流感疫苗接种率从2019-2020冬季的50%上升到2020-2021冬季的64%。在接种和未接种SARS-CoV-2疫苗的患者中,焦虑患者的比例相似。在多变量分析中,未接种疫苗、女性、接受生物药物和生活质量差与自我隔离独立相关。结论IRD患者的焦虑和自我隔离水平在初始封锁期后有所下降。一半的患者报告在2021年5月进行了自我隔离,这一阶段包括广泛重新开放社会和大规模接种疫苗。由于缺乏大流行前的数据,无法充分了解大流行对IRD患者焦虑和自我隔离的长期影响。
{"title":"Long-term Behavioral Changes During the COVID-19 Pandemic and Impact of Vaccination in Patients With Inflammatory Rheumatic Diseases","authors":"B. Glintborg, D. Jensen, L. Terslev, O. Hendricks, M. Østergaard, S. Rasmussen, M. P. Jensen, T. Adelsten, A. Colic, K. Danebod, M. Kildemand, A. Loft, H. Munk, J. K. Pedersen, R. Østgård, C. M. Sørensen, N. Krogh, J. Agerbo, C. Ziegler, M. Hetland","doi":"10.3899/jrheum.211280","DOIUrl":"https://doi.org/10.3899/jrheum.211280","url":null,"abstract":"Objective To explore anxiety and self-isolation in patients with inflammatory rheumatic disease (IRD)15 months into the coronavirus disease 2019 (COVID-19) pandemic, including attitudes toward and effects of SARS-CoV-2 vaccination. Methods A nationwide online survey was conducted at 3 timepoints: May 2020, November 2020, and May 2021. Patients with IRD followed in the Danish Rheumatology Quality Registry (DANBIO) were asked about the effects of the pandemic, including SARS-CoV-2 infection and their behavior, anxiety, and concerns. The May 2021 survey included attitudes toward SARS-CoV-2 and influenza vaccination. Characteristics associated with self-isolation in May 2021 were explored with adjusted logistic regression analyses that included patient characteristics and SARS-CoV-2 vaccination status. Results Respondents to surveys 1, 2, and 3 included 12,789; 14,755; and 13,921 patients, respectively; 64% had rheumatoid arthritis and 63% were female. Anxiety and concerns were highest in May 2020 and decreased to stable levels in November 2020 and May 2021; 86%, 50%, and 52% of respondents reported self-isolation, respectively. In May 2021, 4% of respondents self-reported previous SARS-CoV-2 infection. The SARS-CoV-2 vaccine acceptance rate was 86%, and the proportion of patients vaccinated against influenza had increased from 50% in winter 2019-2020 to 64% in winter 2020-2021. The proportion of patients with anxiety appeared similar among those vaccinated and unvaccinated against SARS-CoV-2. In multivariable analyses, being unvaccinated, female gender, receiving biologic drugs, and poor quality of life were independently associated with self-isolation. Conclusion Levels of anxiety and self-isolation decreased after the initial lockdown period in patients with IRD. Half of the patients reported self-isolation in May 2021, a phase that included widespread reopening of society and large-scale vaccination. The lack of prepandemic data prevented a full understanding of the long-term effects of the pandemic on anxiety and self-isolation in patients with IRD.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"35 1","pages":"1163 - 1172"},"PeriodicalIF":0.0,"publicationDate":"2022-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81540457","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Patient Acceptable Symptom State for Burden From Appearance Changes in People With Systemic Sclerosis: A Cross-sectional Survey 系统性硬化症患者可接受的外观变化负担症状状态:一项横断面调查
Q2 Medicine Pub Date : 2022-06-01 DOI: 10.3899/jrheum.210889
M. Le Ralle, C. Daste, F. Rannou, L. Kwakkenbos, M. Carrier, M. Lefèvre-Colau, A. Roren, B. Thombs, L. Mouthon, C. Nguyen
Objective People with systemic sclerosis (SSc) often report substantial burden from appearance changes. We aimed to estimate the patient acceptable symptom state (PASS) for burden from appearance changes in people with SSc. Methods We conducted a secondary analysis of the SCISCIF II study, a cross-sectional survey of 113 patients with SSc from France enrolled in the Scleroderma Patient-centered Intervention Network Cohort. Burden from appearance changes was assessed with a self-administered numeric rating scale (0, no burden to 10, maximal burden). Acceptability of the symptom state was assessed with a specific anchoring question. Participants who answered yes were in the group of patients who considered their symptom state as acceptable. The PASS for the burden from appearance changes was estimated with the 75th percentile method. Results Assessments of burden from appearance changes and answers to the anchoring question were available in 82/113 (73%) participants from the SCISCIF II study. Median age was 55 (IQR 24) years, mean disease duration 9.6 (SD 6.5) years and 32/80 (40%) participants had diffuse cutaneous SSc. The PASS estimate for the burden from appearance changes was 4.8 (95% CI 1.0-7.0) of 10 points. Conclusion Our study provides a PASS estimate for burden from appearance changes. Our estimate could serve as a binary response criterion to assess the efficacy of treatments targeting burden from appearance changes.
目的:系统性硬化症(SSc)患者经常报告外观变化带来的沉重负担。我们的目的是评估SSc患者外观变化带来的负担的患者可接受症状状态(PASS)。方法:我们对SCISCIF II研究进行了二次分析,这是一项来自法国的113例SSc患者的横断面调查,纳入硬皮病患者为中心的干预网络队列。采用自我管理的数字评分量表(0,无负担至10,最大负担)评估外观变化带来的负担。用一个特定的锚定问题来评估症状状态的可接受性。回答“是”的参与者属于认为自己的症状状态可以接受的患者群体。外观变化负担的PASS用75百分位法估计。结果:在SCISCIF II研究中,82/113(73%)参与者可获得外观变化带来的负担评估和锚定问题的答案。中位年龄为55岁(IQR 24)岁,平均病程9.6年(SD 6.5)年,32/80(40%)的参与者患有弥漫性皮肤SSc。外观变化造成的负担的PASS估计为4.8 (95% CI 1.0-7.0),满分为10分。结论本研究提供了对外观变化负担的PASS估计。我们的估计可以作为一个二元反应标准来评估针对外观改变负担的治疗效果。
{"title":"Patient Acceptable Symptom State for Burden From Appearance Changes in People With Systemic Sclerosis: A Cross-sectional Survey","authors":"M. Le Ralle, C. Daste, F. Rannou, L. Kwakkenbos, M. Carrier, M. Lefèvre-Colau, A. Roren, B. Thombs, L. Mouthon, C. Nguyen","doi":"10.3899/jrheum.210889","DOIUrl":"https://doi.org/10.3899/jrheum.210889","url":null,"abstract":"Objective People with systemic sclerosis (SSc) often report substantial burden from appearance changes. We aimed to estimate the patient acceptable symptom state (PASS) for burden from appearance changes in people with SSc. Methods We conducted a secondary analysis of the SCISCIF II study, a cross-sectional survey of 113 patients with SSc from France enrolled in the Scleroderma Patient-centered Intervention Network Cohort. Burden from appearance changes was assessed with a self-administered numeric rating scale (0, no burden to 10, maximal burden). Acceptability of the symptom state was assessed with a specific anchoring question. Participants who answered yes were in the group of patients who considered their symptom state as acceptable. The PASS for the burden from appearance changes was estimated with the 75th percentile method. Results Assessments of burden from appearance changes and answers to the anchoring question were available in 82/113 (73%) participants from the SCISCIF II study. Median age was 55 (IQR 24) years, mean disease duration 9.6 (SD 6.5) years and 32/80 (40%) participants had diffuse cutaneous SSc. The PASS estimate for the burden from appearance changes was 4.8 (95% CI 1.0-7.0) of 10 points. Conclusion Our study provides a PASS estimate for burden from appearance changes. Our estimate could serve as a binary response criterion to assess the efficacy of treatments targeting burden from appearance changes.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"7 1","pages":"903 - 907"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84143063","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Active Disease in Psoriatic Arthritis: An Assessment of Spondyloarthritis International Society Health Index (ASAS-HI)–based Analysis 银屑病关节炎中的活动性疾病:基于国际社会健康指数(ASAS-HI)的分析
Q2 Medicine Pub Date : 2022-06-01 DOI: 10.3899/jrheum.210887
R. Queiró, I. Morante, I. Braña
Psoriatic arthritis (PsA) is a chronic inflammatory arthritis that affects one-third of patients with psoriasis (PsO). PsA is a relatively common condition in rheumatology clinics. In fact, the prevalence of PsA increased to approximately 0.6% of the general population in a recent epidemiological study carried out in Spain.1.
银屑病关节炎(PsA)是一种慢性炎症性关节炎,影响三分之一的银屑病(PsO)患者。PsA是风湿病临床较为常见的一种疾病。事实上,最近在西班牙进行的一项流行病学研究表明,PsA的患病率增加到约占总人口的0.6%。
{"title":"Active Disease in Psoriatic Arthritis: An Assessment of Spondyloarthritis International Society Health Index (ASAS-HI)–based Analysis","authors":"R. Queiró, I. Morante, I. Braña","doi":"10.3899/jrheum.210887","DOIUrl":"https://doi.org/10.3899/jrheum.210887","url":null,"abstract":"Psoriatic arthritis (PsA) is a chronic inflammatory arthritis that affects one-third of patients with psoriasis (PsO). PsA is a relatively common condition in rheumatology clinics. In fact, the prevalence of PsA increased to approximately 0.6% of the general population in a recent epidemiological study carried out in Spain.1.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"78 1","pages":"961 - 963"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88562125","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Fear of the Unknown: Can We Help Individuals With a Systemic Autoimmune Rheumatic Disease Deal With Uncertainty? 对未知的恐惧:我们能帮助患有系统性自身免疫性风湿病的个体应对不确定性吗?
Q2 Medicine Pub Date : 2022-06-01 DOI: 10.3899/jrheum.220502
G. Simons, M. Falahee
Unfortunately, not much is certain in systemic autoimmune rheumatic diseases (SARDs). People with a SARD such as systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) are dealing with a chronic, inflammatory, and often unpredictable autoimmune condition that might cause them to experience illness-related uncertainty.1,2.
不幸的是,在系统性自身免疫性风湿病(SARDs)中,没有多少是确定的。SARD患者,如系统性红斑狼疮(SLE)和系统性硬化症(SSc),是一种慢性、炎症性、通常不可预测的自身免疫性疾病,可能导致他们经历与疾病相关的不确定性1,2。
{"title":"Fear of the Unknown: Can We Help Individuals With a Systemic Autoimmune Rheumatic Disease Deal With Uncertainty?","authors":"G. Simons, M. Falahee","doi":"10.3899/jrheum.220502","DOIUrl":"https://doi.org/10.3899/jrheum.220502","url":null,"abstract":"Unfortunately, not much is certain in systemic autoimmune rheumatic diseases (SARDs). People with a SARD such as systemic lupus erythematosus (SLE) and systemic sclerosis (SSc) are dealing with a chronic, inflammatory, and often unpredictable autoimmune condition that might cause them to experience illness-related uncertainty.1,2.","PeriodicalId":35278,"journal":{"name":"The Journal of rheumatology. Supplement","volume":"2 1","pages":"977 - 979"},"PeriodicalIF":0.0,"publicationDate":"2022-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75403771","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
期刊
The Journal of rheumatology. Supplement
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