The Upper Gastrointestinal Cancer Registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers
The Upper Gastrointestinal Cancer Registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers
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DOI：
10.1136/bmjopen-2019-031434
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发表时间：
2019-09-01
期刊：
影响因子：
2.9
通讯作者：
Zalcberg, John R.
中科院分区：
文献类型：
--
作者：
Maharaj, Ashika D.;Holland, Jennifer F.;Zalcberg, John R.
目的上消化道癌症登记处（UGICR）的发展，以监测和提高护理质量提供给患者的上消化道cancersinAustralia.Participants它支持四个癌症模块：胰腺癌，食管胃，胆管和原发性肝癌。胰腺癌（PC）模块是第一个实施的模块，其他模块正在分阶段建立。如果个人年满18岁或以上，在澳大利亚参与的公立/私立医院或私人诊所接受过癌症护理，并且没有选择退出，则可以被招募到登记处。迄今为止的调查结果UGICR由多学科指导委员会管理，该委员会提供临床治理并监督临床工作团队。工作组的作用是根据每个登记册模块的最佳做法制定质量指标，制定最基本的数据集，并为分析和报告结果提供指导。从现有数据源（基于人群的癌症发病率登记、病理学数据库和医院编码数据）和临床记录中手动采集数据。数据收集者直接将信息输入到一个安全的基于Web的研究电子数据采集（REDCap）数据收集平台。PC模块开始与试点阶段，随后，我们使用了正式的修改后的德尔菲共识过程，以建立一套核心的质量指标PC。开发的第二个模块是食管胃癌（OGC）模块。未来计划UGICR将定期提供风险调整后的基准绩效报告，这些绩效将突出医疗服务水平上的护理和临床结果的差异。该登记研究还旨在收集患者报告的结局（PRO），这将进一步增加我们对这些癌症患者护理的理解。
Purpose The Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia.Participants It supports four cancer modules: pancreatic, oesophagogastric, biliary and primary liver cancer. The pancreatic cancer (PC) module was the first module to be implemented, with others being established in a staged approach. Individuals are recruited to the registry if they are aged 18 years or older, have received care for their cancer at a participating public/private hospital or private clinic in Australia and do not opt out of participation.Findings to date The UGICR is governed by a multidisciplinary steering committee that provides clinical governance and oversees clinical working parties. The role of the working parties is to develop quality indicators based on best practice for each registry module, develop the minimum datasets and provide guidance in analysing and reporting of results. Data are captured from existing data sources (population-based cancer incidence registries, pathology databases and hospital-coded data) and manually from clinical records. Data collectors directly enter information into a secure web-based Research Electronic Data Capture (REDCap) data collection platform. The PC module began with a pilot phase, and subsequently, we used a formal modified Delphi consensus process to establish a core set of quality indicators for PC. The second module developed was the oesophagogastric cancer (OGC) module. Results of the 1 year pilot phases for PC and OGC modules are included in this cohort profile.Future plans The UGICR will provide regular reports of risk-adjusted, benchmarked performance on a range of quality indicators that will highlight variations in care and clinical outcomes at a health service level. The registry has also been developed with the view to collect patient-reported outcomes (PROs), which will further add to our understanding of the care of patients with these cancers.