Stakeholder Consensus Selection of Data Elements and Indicators for a Pancreatic Cancer Surgical Outcomes Registry in Australia and Aotearoa New Zealand: Modified Delphi Process

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BACKGROUND: The data elements and indicators in a clinical quality registry (CQR) contribute towards the utility of its output and should be informed by stakeholder input. In Australia and Aotearoa New Zealand (AANZ), there is no CQR for pancreatic cancer surgery. This study aimed to select data elements and registry aims with stakeholder input. METHODS: A three-round modified Delphi consensus process was conducted involving clinicians and consumers. An initial list of data elements was generated through a review of literature, existing international registries, and guidelines. Participants rated the importance of each element using the RAND/UCLA method. In the final round, ≥ 75% consensus was needed for an element to be accepted. Participants rated potential registry aims. RESULTS: Consumers and clinicians from across AANZ were involved. A total of 66 participants were involved asynchronously across the three rounds (Round 1, n = 33; Round 2, n = 40; Round 3, n = 63), with representatives from consumers, surgery, medical oncology, nutrition, nursing, public health and a consumer organisation. After three rounds, 121 data elements were accepted, and all 9 registry aims were rated with high importance. Of these elements, 54 were classified as quality indicators (structure n = 3, process n = 11, outcome n = 40). CONCLUSION: The utility of a registry relies on having meaningful and feasible data elements and indicators. Through involvement of key stakeholders in a systematic process, this study has selected data elements and indicators for a proposed AANZ pancreatic cancer surgery CQR. This is an essential step towards establishing such a registry. The next steps will be to pilot the dataset with pancreatic surgery centres across the region, and to establish baseline benchmarks.

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