Authors: Ivanova K, Evans S, Rome R, Pilgrim C, Zalcberg J, Cossio D
Background
In 2021, VCR led a study to assess the feasibility of collecting registry derived stage (RD-stage) for pancreatic, liver, stomach, endometrial and ovarian cancers.
Methodology
Business rules for deriving RD-stage were developed by VCR using AJCC Cancer Staging Manual 8th edition and endorsed by tumour-specific Expert Working groups comprising cancer specialists responsible for delivering cancer care. The developed business rules for pancreatic and endometrial were assessed for feasibility of collection by population-based cancer registries (PBCRs). In Victoria, RD-Stage was calculated by medical coders in the VCR on diagnoses between 2018-20 and validated against stage data collected from medical records by the Upper Gastrointestinal Clinical Registry (UGICR) and the National Gynae Oncology Registry (NGOR).
Results
Level of completeness of stage data able to be reported by PBCRs at baseline ranged from 0% to 75% for pancreatic cancer and from 0% to 98% for endometrial carcinoma.
For pancreatic cancer, RD-Stage could not be derived for 165/457 (36%) cases and was not captured for 189/457 (41%) cases in UGICR. There was concordance at stage level (I- IV) for 218/229 (95.8%, Kendall’s coefficient of concordance= 0.92) cases.
For endometrial cancer, RD-Stage could not be derived for 64/457 (14%) cases and was not captured for 44/441 (10%) cases in NGOR. There was concordance at stage level (I-IV) for 393/410 (95.8%, Kendall’s coefficient=0.95) cases.
Discussion and Conclusion:
A barrier to routine capture of RD-Stage data by PBCRs is lack of access to administrative data reporting metastatic disease at diagnosis. RD-Stage performs well against stage collected by clinical quality registries, where it is available in both. A recommendation to Cancer Australia is that stage at diagnosis to be collected and reported in a standard format at a national level by PBCRs.