Abstract：
BACKGROUND: Since the development of the OMERACT Systemic Lupus Erythematosus (SLE) Core Outcome Set (COS) in 1998, many new SLE domains have been identified and measures developed, creating a need to update the SLE COS. To revisit the 1998 SLE COS and research agenda domains, and generate new candidate domains, we conducted this study of patients with SLE and collaborators.
OBJECTIVE: (1) To evaluate existing candidate SLE domains for inclusion in the SLE COS. (2) To generate additional candidate SLE domains for COS consideration. (3) To engage SLE collaborators, including patients, in developing the updated SLE COS.
METHODS: The OMERACT SLE Working Group\'s steering committee developed a survey to assess the importance of candidate SLE domains and generate additional domains for consideration towards the SLE COS. Patients with SLE followed at the University of Toronto Lupus Clinic (patient group) and members of the OMERACT SLE Working Group (collaborator group) were invited to complete the survey between August 2022 and February 2023.
RESULTS: A total of 175 patients were invited and 100 completed the survey. Of 178 collaborators invited, 145 completed the survey. Patients tended to prioritize life-impact domains while collaborators prioritized clinical domains. Both patients and collaborators recommended additional domains to those included in the 1998 SLE COS and research agenda.
CONCLUSIONS: The domain inclusion and importance results demonstrate that patients and collaborators prioritize different domains, so capturing the perspectives of both groups is essential to ensure a holistic assessment of SLE. The results of the study identify domains that already have a high level of agreement for potential inclusion in the SLE COS, domains that require further explanation, and novel domains that warrant consideration.
OBJECTIVE: (1) To evaluate existing candidate SLE domains for inclusion in the SLE COS. (2) To generate additional candidate SLE domains for COS consideration. (3) To engage SLE collaborators, including patients, in developing the updated SLE COS.
METHODS: The OMERACT SLE Working Group\'s steering committee developed a survey to assess the importance of candidate SLE domains and generate additional domains for consideration towards the SLE COS. Patients with SLE followed at the University of Toronto Lupus Clinic (patient group) and members of the OMERACT SLE Working Group (collaborator group) were invited to complete the survey between August 2022 and February 2023.
RESULTS: A total of 175 patients were invited and 100 completed the survey. Of 178 collaborators invited, 145 completed the survey. Patients tended to prioritize life-impact domains while collaborators prioritized clinical domains. Both patients and collaborators recommended additional domains to those included in the 1998 SLE COS and research agenda.
CONCLUSIONS: The domain inclusion and importance results demonstrate that patients and collaborators prioritize different domains, so capturing the perspectives of both groups is essential to ensure a holistic assessment of SLE. The results of the study identify domains that already have a high level of agreement for potential inclusion in the SLE COS, domains that require further explanation, and novel domains that warrant consideration.
摘要：
背景：自从1998年OMERACT系统性红斑狼疮（SLE）核心结果集（COS）的发展以来，已经确定了许多新的SLE领域并制定了措施，创建需要更新SLECOS。为了重新审视1998年SLECOS和研究议程领域，并生成新的候选域，我们对SLE患者及其合作者进行了这项研究.
目的：(1)评估现有的SLE候选域是否包含在SLECOS中。(2)生成用于COS考虑的附加候选SLE域。（3）要聘请SLE合作者，包括患者,在开发更新的SLECOS时。
方法：OMERACTSLE工作组的指导委员会制定了一项调查，以评估候选SLE领域的重要性，并生成其他领域供SLECOS考虑。在多伦多大学狼疮诊所（患者组）随访的SLE患者和OMERACTSLE工作组（合作小组）的成员被邀请在2022年8月至2023年2月之间完成调查。
结果：共邀请了175名患者，100名患者完成了调查。在被邀请的178名合作者中，145人完成了调查。患者倾向于优先考虑影响生活的领域，而合作者则优先考虑临床领域。患者和合作者都建议在1998年SLECOS和研究议程中添加其他领域。
结论：领域纳入和重要性结果表明，患者和合作者优先考虑不同的领域，因此，捕捉两组的观点对于确保对SLE进行全面评估至关重要。该研究的结果确定了已经对潜在纳入SLECOS具有高度一致性的领域，需要进一步解释的领域，和值得考虑的新颖领域。
目的：(1)评估现有的SLE候选域是否包含在SLECOS中。(2)生成用于COS考虑的附加候选SLE域。（3）要聘请SLE合作者，包括患者,在开发更新的SLECOS时。
方法：OMERACTSLE工作组的指导委员会制定了一项调查，以评估候选SLE领域的重要性，并生成其他领域供SLECOS考虑。在多伦多大学狼疮诊所（患者组）随访的SLE患者和OMERACTSLE工作组（合作小组）的成员被邀请在2022年8月至2023年2月之间完成调查。
结果：共邀请了175名患者，100名患者完成了调查。在被邀请的178名合作者中，145人完成了调查。患者倾向于优先考虑影响生活的领域，而合作者则优先考虑临床领域。患者和合作者都建议在1998年SLECOS和研究议程中添加其他领域。
结论：领域纳入和重要性结果表明，患者和合作者优先考虑不同的领域，因此，捕捉两组的观点对于确保对SLE进行全面评估至关重要。该研究的结果确定了已经对潜在纳入SLECOS具有高度一致性的领域，需要进一步解释的领域，和值得考虑的新颖领域。
