Identifying data-fields for a gastrointestinal cancer clinical quality and safety registry: a systematic literature review.

Background: Despite considerable advancements in Upper Gastrointestinal Cancer (UGIC) care in Australia and Aotearoa New Zealand (AAoNZ), the absolute number of deaths remains high. Clinical Quality and Safety Registries (CQRs) enable benchmarking and performance appraisal, however an AAoNZ CQR does not exist. To create this, we first aim to identify all national and international UGIC CQRs and amalgamate their data fields and definitions through a systematic review.

Methods: A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) compliant systematic review was performed using Scopus, Embase, Cochrane and MEDLINE databases. Human studies, in English, reporting on the development of and/or results of all CQRs focused on UGIC were included. Individual data fields were extracted and placed into four categories. Data fields could be further synthesized into data field subcategories if there were direct similarities among studies.

Results: A total of 32 studies-23 national audits or registries and nine international benchmarking studies-were included, encompassing 899 073 patients in 48 countries. Of the total of 1710 individual data fields, 1526 (89.2%) were reported with a definition. The most number of data fields related to Treatment Factors (41.2%), with least number pertaining to Outcomes (7.8%).

Conclusions: This systematic review has amalgamated all data fields and definitions from UGIC CQRs or studies. Establishing an AAoNZ Clinical and Quality Safety Registry for our population will enable us to benchmark the performance of our UGIC care internationally. Further studies are indicated in the context of the use of the Delphi method to facilitate this process.