Pons-Estel Guillermo J, Monticielo Odirlei Andre, Torres Dos Reis Neto Edgard, Mejia-Vilet Juan Manuel, Al-Homood Ibrahim, Al-Jayyousi Reem, Seguro Luciana Parente Costa, Attar Suzan M, García Mercedes A, Babini Alejandra, Almaghlouth Ibrahim A, Scolnik Marina, Magri Sebastián Juan, Yuki Emily Figueiredo Neves, Montezuma Sales Gabriel Teixeira, Medrano-Ramirez Gabriel, Asiri Alhussain, Badsha Humeira, Elbadawi Faisal, Al Wahshi Humaid A, Alzahrani Zeyad, Abdulkarim Saadeya, Hussain Razia, Rocha Bruno, Gouhar Raef, Khamashta Munther
Departamento de Medicina Interna, Grupo Oroño-Centro Regional de Enfermedades Autoinmunes y Reumáticas (GOCREAR), Rosario, Argentina.
Division of Rheumatology, Hospital de Clínicas de Porto Alegre, Universidade Federal do Rio Grande do Sul,Porto Alegre, Brazil.
Lupus. 2025 Aug;34(9):899-911. doi: 10.1177/09612033251347341. Epub 2025 Jun 6.
ObjectiveTo better understand the acceptance and potential application of the systemic lupus erythematosus (SLE) and lupus nephritis (LN) disease modification framework, which was first proposed in 2022, among experts in the Gulf region and Latin America.MethodsTwo cross-sectional Delphi surveys of a panel of expert SLE physicians were conducted, with a workshop discussion held between the two surveys. Surveys comprised multiple choice and open-response questions. Experts from Argentina, Bahrain, Brazil, Mexico, Oman, Saudi Arabia and United Arab Emirates were selected based on their demonstrated expertise in SLE. Consensus was indicated by >75% agreement among experts in survey responses. Consensus was also evaluated by Gulf and Latin American regions to identify any regional differences.ResultsThere was consensus across all the queried statements on the concept and components of disease modification, with some minor regional differences observed. Experts unanimously agreed that early diagnosis, early referral to a lupus specialist and a multidisciplinary approach are key factors for achieving disease modification and better patient outcomes. Aspects of the published SLE/LN disease modification definition were either 'routinely' (31%) or 'sometimes' (62%) assessed in current clinical practice. A consensus was reached that biomarkers are a key component of evaluating disease modification (91%), but that currently available biomarkers are sub-optimal (96%). There was consensus that immunosuppressants (96%), biologics (92%) and hydroxychloroquine (88%) are disease modifying treatments. Experts from the Gulf, but not Latin America, agreed that glucocorticoids are not disease modifying.ConclusionsThere was strong consensus across experts from the Gulf and Latin America that the concept of disease modification can provide a valuable framework to support clinicians for the management of patients with SLE and LN. Experts emphasised that clear guidance is required for clinicians to apply the disease modification framework to their routine practice, and in varying local healthcare systems.
目的
为了更好地了解2022年首次提出的系统性红斑狼疮(SLE)和狼疮性肾炎(LN)疾病改善框架在海湾地区和拉丁美洲专家中的接受程度和潜在应用情况。
方法
对一组SLE专家医生进行了两次横断面德尔菲调查,并在两次调查之间举行了一次研讨会讨论。调查包括多项选择题和开放式问题。根据在SLE方面已证明的专业知识,从阿根廷、巴林、巴西、墨西哥、阿曼、沙特阿拉伯和阿拉伯联合酋长国挑选了专家。调查答复中专家意见一致率超过75%表明达成共识。还按海湾地区和拉丁美洲地区评估了共识情况,以确定是否存在任何地区差异。
结果
关于疾病改善的概念和组成部分的所有被询问陈述都达成了共识,观察到一些细微的地区差异。专家们一致认为,早期诊断、早期转诊至狼疮专科医生和多学科方法是实现疾病改善和改善患者预后的关键因素。已发表的SLE/LN疾病改善定义的各个方面在当前临床实践中要么“常规”(31%)评估,要么“有时”(62%)评估。达成的共识是,生物标志物是评估疾病改善的关键组成部分(91%),但目前可用的生物标志物并不理想(96%)。达成的共识是,免疫抑制剂(96%)、生物制剂(92%)和羟氯喹(88%)是疾病改善治疗方法。海湾地区的专家(而非拉丁美洲的专家)一致认为糖皮质激素不是疾病改善药物。
结论
海湾地区和拉丁美洲的专家们达成了强烈共识,即疾病改善概念可为支持临床医生管理SLE和LN患者提供有价值的框架。专家们强调,需要为临床医生提供明确指导,以便他们在日常实践以及不同的当地医疗系统中应用疾病改善框架。