The Upper Gastrointestinal Cancer Registry (UGICR): a clinical quality registry to monitor and improve care in upper gastrointestinal cancers

Abstract

PurposeThe Upper Gastrointestinal Cancer Registry (UGICR) was developed to monitor and improve the quality of care provided to patients with upper gastrointestinal cancers in Australia.ParticipantsIt 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 dateThe 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 plansThe 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.

Barriers and enablers to the implementation of protocol-based imaging in pancreatic cancer: A qualitative study using the theoretical domains framework

“…A stratified purposeful sampling strategy was used to recruit participants, followed by snowball sampling [ 21 ]. This initially involved inviting by email clinicians contributing to the UGICR and clinicians identified as specialising in PC on hospital websites [ 15 ]. In addition, those interviewed were asked to nominate other specialists for researchers to contact.…”

“…A set of quality indicators for PC was developed by Australian clinicians in 2018 and compliance with these indicators is reported by the Upper Gastrointestinal Cancer Registry (UGICR) [ 14 , 15 ]. Preliminary analysis of registry data found that 29% (n = 64/224) of patients with potentially resectable and 43% (n = 54/125) of patients with locally advanced disease (without metastases) did not undergo either a documented PPCT or MRI.…”

A qualitative investigation of the supportive care experiences of people living with pancreatic and oesophagogastric cancer

“…Interested participants could either contact the researcher via telephone, email or the prepaid envelope to express an interest in participating. The UGICR is a clinical quality registry that collects information pertaining to the diagnosis, treatment and outcomes of patients with upper gastrointestinal cancers, and has coverage of approximately 70% of pancreatic cancer cases and 55% of OG cancer cases diagnosed across Victoria [12]. Purposeful sampling was used to recruit participants from a range of socio-demographic backgrounds.…”

Postoperative arginine-enriched immune modulating nutrition: Long-term survival results from a randomised clinical trial in patients with oesophagogastric and pancreaticobiliary cancer

“…The 5-year survival rate for oesophagogastric and pancreaticobiliary cancers is amongst the worst of all tumour types [ 1 ]. Surgical resection, which is the primary curative treatment, can suppress immune function and increase the risk of infection.…”