Ernstsson Olivia, Janssen Mathieu F, Heintz Emelie
Department of Learning, Informatics, Management and Ethics (LIME), Karolinska Institutet, Tomtebodavägen 18A, SE-171 77, Stockholm, Sweden.
Section Medical Psychology and Psychotherapy, Department of Psychiatry, Erasmus MC, Dr. Molewaterplein 40, Rotterdam, 3015 GD, the Netherlands.
J Patient Rep Outcomes. 2020 Sep 16;4(1):78. doi: 10.1186/s41687-020-00231-8.
The Swedish National Quality Registries (NQRs) contain individual-level health care data for specific patient populations, or patients receiving specific interventions. Approximately 90% of the 105 Swedish NQRs include any patient-reported outcome measure, with EQ-5D being the most common. As there has been no general overview of EQ-5D data within the NQRs, this study fills a knowledge gap by reporting how the data are collected, presented, and used at different levels of the Swedish health care system.
All 46 NQRs with a license for the use of EQ-5D were included. Information was retrieved from the registries' annual reports or from websites, using a template that was subsequently sent to each registry for completion and confirmation. If considered necessary, the contact was followed-up with an interview, either in-person or over the telephone. The uses of EQ-5D were categorised as denoting usage for follow-up, decision-making, or quality improvement in Swedish health care.
In total, 41 of the 46 licensed registries reported collection of EQ-5D data. EQ-5D is most commonly collected within registries related to the musculoskeletal system, but it has a wide application also in other disease areas. Thirty-six registries provide EQ-5D results to patients, clinicians, or other decision-makers. Twenty-two of the registries reported that EQ-5D data are being used for follow-up, decision-making or quality improvement. The registries most commonly reported use of data for assessing interventions, and in quality indicators to follow-up the quality of care at a national level.
Collection and use of EQ-5D data vary across the Swedish NQRs, which may partly be accounted for by the different purposes of the registries. The provided examples of use illustrate how EQ-5D data can inform decisions at different levels of the health care system. However, there is potential for improving the use of EQ-5D data.
瑞典国家质量登记处（NQRs）包含特定患者群体或接受特定干预措施患者的个体层面医疗保健数据。瑞典105个NQRs中约90%包含患者报告的结局指标，其中EQ-5D最为常见。由于此前没有对NQRs中的EQ-5D数据进行全面概述，本研究通过报告瑞典医疗保健系统不同层面的数据收集、呈现和使用方式，填补了这一知识空白。
纳入所有46个获得使用EQ-5D许可的NQRs。信息从登记处的年度报告或网站获取，使用模板随后发送给每个登记处以供填写和确认。如有必要，通过面对面或电话访谈进行跟进。EQ-5D的用途分为用于瑞典医疗保健的随访、决策或质量改进。
46个获得许可的登记处中，共有41个报告收集了EQ-5D数据。EQ-5D最常在与肌肉骨骼系统相关的登记处收集，但在其他疾病领域也有广泛应用。36个登记处向患者、临床医生或其他决策者提供EQ-5D结果。22个登记处报告称EQ-5D数据用于随访、决策或质量改进。登记处最常报告的数据用途是评估干预措施以及用于国家层面的护理质量跟踪质量指标。
瑞典NQRs中EQ-5D数据的收集和使用各不相同，这可能部分归因于登记处的不同目的。所提供的使用示例说明了EQ-5D数据如何为医疗保健系统不同层面的决策提供信息。然而，EQ-5D数据的使用仍有改进空间。
