Castrejon I, Carmona L, Agrinier N, Andres M, Briot K, Caron M, Christensen R, Consolaro A, Curbelo R, Ferrer Montserrat, Foltz Violaine, Gonzalez C, Guillemin F, Machado P M, Prodinger Birgit, Ravelli A, Scholte-Voshaar M, Uhlig T, van Tuyl L H D, Zink A, Gossec L
Division of Rheumatology, Rush University Medical Center, Chicago, USA.
Instituto de Salud Musculoesquelética, Madrid, Spain.
Clin Exp Rheumatol. 2015 Nov-Dec;33(6):910-6. Epub 2015 Mar 23.
Patient reported outcomes (PROs) are relevant in rheumatology. Variable accessibility and validity of commonly used PROs are obstacles to homogeneity in evidence synthesis. The objective of this project was to provide a comprehensive library of "validated PROs".
A launch meeting with rheumatologists, PROs methodological experts, and patients, was held to define the library's aims and scope, and basic requirements. To feed the library we performed systematic reviews on selected diseases and domains. Relevant information on PROs was collected using standardised data collection forms based on the COSMIN checklist.
The EULAR Outcomes Measures Library (OML), whose aims are to provide and to advise on PROs on a user-friendly manner albeit based on scientific grounds, has been launched and made accessible to all. PROs currently included cover any domain and, are generic or specifically target to the following diseases: rheumatoid arthritis, osteoarthritis, spondyloarthritis, low back pain, systemic lupus erythematosus, gout, osteoporosis, juvenile idiopathic arthritis, and fibromyalgia. Up to 236 instruments (106 generic and 130 specific) have been identified, evaluated, and included. The systematic review for SLE, which yielded 10 specific instruments, is presented here as an example. The OML website includes, for each PRO, information on the construct being measured and the extent of validation, recommendations for use, and available versions; it also contains a glossary on common validation terms.
The OML is an in progress library led by rheumatologists, related professionals and patients, that will help to better understand and apply PROs in rheumatic and musculoskeletal diseases.
患者报告结局（PROs）在风湿病学中具有重要意义。常用PROs的可及性和有效性存在差异，这是证据综合同质化的障碍。本项目的目的是提供一个全面的“经过验证的PROs”库。
与风湿病学家、PROs方法学专家和患者举行了一次启动会议，以确定该库的目标和范围以及基本要求。为充实该库，我们对选定的疾病和领域进行了系统评价。基于COSMIN清单，使用标准化数据收集表收集有关PROs的相关信息。
欧洲抗风湿病联盟结局测量库（OML）已启动并向所有人开放，其目的是以用户友好的方式提供PROs并提供相关建议，且基于科学依据。目前纳入的PROs涵盖任何领域，包括通用型或专门针对以下疾病的：类风湿关节炎、骨关节炎、脊柱关节炎、腰痛、系统性红斑狼疮、痛风、骨质疏松症、幼年特发性关节炎和纤维肌痛。已识别、评估并纳入了多达236种工具（106种通用型和130种特定型）。本文以系统性红斑狼疮的系统评价为例，该评价产生了10种特定工具。OML网站为每个PRO提供了有关所测量结构和验证程度的信息、使用建议以及可用版本；它还包含一个关于常见验证术语的词汇表。
OML是一个由风湿病学家、相关专业人员和患者主导的在建库，将有助于更好地理解和应用PROs于风湿性和肌肉骨骼疾病。
