Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Maharaj AD

PROVIDER: S-EPMC6773358 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Publications

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

Maharaj Ashika D AD Holland Jennifer F JF Scarborough Ri O RO Evans Sue M SM Ioannou Liane J LJ Brown Wendy W Croagh Daniel G DG Pilgrim Charles H C CHC Kench James G JG Lipton Lara R LR Leong Trevor T McNeil John J JJ Nikfarjam Mehrdad M Aly Ahmad A Burton Paul R PR Cashin Paul A PA Chu Julie J Duong Cuong P CP Evans Peter P Goldstein David D Haydon Andrew A Hii Michael W MW Knowles Brett P F BPF Merrett Neil D ND Michael Michael M Neale Rachel E RE Philip Jennifer J Porter Ian W T IWT Smith Marty M Spillane John J Tagkalidis Peter P PP Zalcberg John R JR

BMJ open 20190930 9

<h4>Purpose</h4>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.<h4>Participants</h4>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 ...[more]

PMID: 31575580

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Project description:Malnutrition is prevalent in people with upper gastrointestinal (GI) cancers and is associated with shorter survival and poor quality of life. In order to effectively prevent or treat malnutrition, nutrition interventions must ensure appropriate energy provision to meet daily metabolic demands. In practice, the energy needs of people with cancer are frequently estimated from predictive equations which are not cancer-specific and are demonstrated to be inaccurate in this population. The purpose of this scoping review was to synthesize the existing evidence regarding energy expenditure in people with upper GI cancer. Three databases (Ovid MEDLINE, Embase via Ovid, CINAHL plus) were systematically searched to identify studies reporting on resting energy expenditure using indirect calorimetry and total energy expenditure using doubly labeled water (DLW) in adults with any stage of upper GI cancer at any point from diagnosis. A total of 57 original research studies involving 2,125 individuals with cancer of the esophagus, stomach, pancreas, biliary tract, or liver were eligible for inclusion. All studies used indirect calorimetry, and one study used DLW to measure energy expenditure, which was reported unadjusted in 42 studies, adjusted for body weight in 32 studies, and adjusted for fat-free mass in 13 studies. Energy expenditure in upper GI cancer was compared with noncancer controls in 19 studies and measured compared with predicted energy expenditure reported in 31 studies. There was heterogeneity in study design and in reporting of important clinical characteristics between studies. There was also substantial variation in energy expenditure between studies and within and between cancer types. Given this heterogeneity and known inaccuracies of predictive equations in patients with cancer, energy expenditure should be measured in practice wherever feasible. Additional research in cohorts defined by cancer type, stage, and treatment is needed to further characterize energy expenditure in upper GI cancer.

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Dataset Information

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

Purpose

Participants

Findings to date

Future plans

Publications

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

Similar Datasets

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