Aims
Cancer outcome measurement in Australia is fragmented: patient-reported outcome and experience measures (PROMs & PREMs) are collected inconsistently, limiting comparability and sector-wide reporting. This work aimed to define a cancer-agnostic national core outcome set (COS) of patient-reported outcome and experience domains and build the infrastructure enabling services to adopt it.
Methods
Four connected streams were undertaken. Existing measures and outcome domains were systematically mapped to establish a candidate domain pool, validated against what matters most to patients, carers, and cancer care professionals. Second, a modified Delphi consensus process engaged a multidisciplinary panel of clinicians, researchers, consumers, and policymakers (n=195) across three rounds to define the COS. Third, the COS was mapped to existing PROMs and PREMs to recommend instruments for services not yet collecting, and to identify gap-filling items for those already collecting. Finally, a COS Alignment Tool is being developed to let services map their current measures against the endorsed set.
Results
Consensus established a core outcome set of eight patient-reported outcomes, six patient-reported experience, and an open-text box. Mapping of the COS against existing measures produced three recommendations: 1) the EORTC QLQ-C30; 2) the FACT-G, with additional FACIT library items; and 3) the ESAS-r with the NCCN DT/PL. Remaining gaps are filled with items from an existing item library as appropriate. The alignment tool will be hosted by a national agency for enduring use beyond the program.
Conclusions
This is the first national endorsed COS of PROMs & PREMs for Australian cancer care, providing a standardised foundation for what is measured nationally. Its value lies in enabling comparable outcome reporting sector-wide: work is already underway to test the feasibility of a national reporting and visualisation platform built on the COS, and enduring national hosting of the alignment tool ensures the standard outlasts the program that created it.