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Abstract：
Data collected during routine clinic visits are key to driving successful quality improvement in clinical services and enabling integration of research into routine care. The purpose of this study was to develop a standardized core dataset for juvenile idiopathic arthritis (JIA) (termed CAPTURE-JIA), enabling routine clinical collection of research-quality patient data useful to all relevant stakeholder groups (clinicians, service-providers, researchers, health service planners and patients/families) and including outcomes of relevance to patients/families.
Collaborative consensus-based approaches (including Delphi and World Café methodologies) were employed. The study was divided into discrete phases, including collaborative working with other groups developing relevant core datasets and a two-stage Delphi process, with the aim of rationalizing the initially long data item list to a clinically feasible size.
The initial stage of the process identified collection of 297 discrete data items by one or more of fifteen NHS paediatric rheumatology centres. Following the two-stage Delphi process, culminating in a consensus workshop (May 2015), the final approved CAPTURE-JIA dataset consists of 62 discrete and defined clinical data items including novel JIA-specific patient-reported outcome and experience measures.
CAPTURE-JIA is the first \'JIA core dataset\' to include data items considered essential by key stakeholder groups engaged with leading and improving the clinical care of children and young people with JIA. Collecting essential patient information in a standard way is a major step towards improving the quality and consistency of clinical services, facilitating collaborative and effective working, benchmarking clinical services against quality indicators and aligning treatment strategies and clinical research opportunities.
Collaborative consensus-based approaches (including Delphi and World Café methodologies) were employed. The study was divided into discrete phases, including collaborative working with other groups developing relevant core datasets and a two-stage Delphi process, with the aim of rationalizing the initially long data item list to a clinically feasible size.
The initial stage of the process identified collection of 297 discrete data items by one or more of fifteen NHS paediatric rheumatology centres. Following the two-stage Delphi process, culminating in a consensus workshop (May 2015), the final approved CAPTURE-JIA dataset consists of 62 discrete and defined clinical data items including novel JIA-specific patient-reported outcome and experience measures.
CAPTURE-JIA is the first \'JIA core dataset\' to include data items considered essential by key stakeholder groups engaged with leading and improving the clinical care of children and young people with JIA. Collecting essential patient information in a standard way is a major step towards improving the quality and consistency of clinical services, facilitating collaborative and effective working, benchmarking clinical services against quality indicators and aligning treatment strategies and clinical research opportunities.
摘要：
在常规临床就诊期间收集的数据是推动临床服务质量成功改善并将研究整合到常规护理中的关键。这项研究的目的是开发青少年特发性关节炎（JIA）的标准化核心数据集（称为CAPTURE-JIA），实现对所有相关利益相关者群体有用的研究质量患者数据的常规临床收集(临床医生，服务提供商，研究人员,卫生服务规划者和患者/家庭)，并包括与患者/家庭相关的结果。
采用基于协作共识的方法（包括Delphi和WorldCafé方法）。研究分为离散阶段，包括与其他小组合作开发相关核心数据集和两阶段Delphi流程，目的是将最初较长的数据项列表合理化到临床上可行的大小。
该过程的初始阶段确定了由15个NHS儿科风湿病中心中的一个或多个收集的297个离散数据项。遵循两阶段的Delphi过程，最终形成共识研讨会(2015年5月)，最终批准的CAPTURE-JIA数据集包含62个离散且定义的临床数据项,包括新的JIA特异性患者报告的结局和经验指标.
CAPTURE-JIA是第一个“JIA核心数据集”，其中包括主要利益相关者团体认为必不可少的数据项，这些利益相关者团体致力于通过JIA领导和改善儿童和年轻人的临床护理。以标准方式收集患者基本信息是提高临床服务质量和一致性的重要一步，促进协作和有效的工作，根据质量指标对临床服务进行基准测试，并调整治疗策略和临床研究机会。
采用基于协作共识的方法（包括Delphi和WorldCafé方法）。研究分为离散阶段，包括与其他小组合作开发相关核心数据集和两阶段Delphi流程，目的是将最初较长的数据项列表合理化到临床上可行的大小。
该过程的初始阶段确定了由15个NHS儿科风湿病中心中的一个或多个收集的297个离散数据项。遵循两阶段的Delphi过程，最终形成共识研讨会(2015年5月)，最终批准的CAPTURE-JIA数据集包含62个离散且定义的临床数据项,包括新的JIA特异性患者报告的结局和经验指标.
CAPTURE-JIA是第一个“JIA核心数据集”，其中包括主要利益相关者团体认为必不可少的数据项，这些利益相关者团体致力于通过JIA领导和改善儿童和年轻人的临床护理。以标准方式收集患者基本信息是提高临床服务质量和一致性的重要一步，促进协作和有效的工作，根据质量指标对临床服务进行基准测试，并调整治疗策略和临床研究机会。
