The completeness, concordance, and timeliness of cancer diagnosis data collected on-site during a prospective cohort study compared to central cancer registries in England and Wales

Thesis

Cancer places a high burden on healthcare systems and impacted individuals, leading to significant resources being committed to cancer research. Using central databases, such as national cancer registries, is one possible method for improving the resource burden associated with clinical cancer research. I compared the completeness, concordance, and timeliness of diagnostic cancer data obtained on-site to the national registries of England and Wales to determine when it is most appropriate to use these resources. On-site data were collected from 44 hospital sites during a prospective cohort study in England and Wales (SYMPLIFY; ISRCTN10226380). Linked central data was obtained from Digital Health and Care Wales (DHCW), the Welsh Cancer Intelligence and Surveillance Unit (WCISU), and the English National Cancer Registration Dataset (NCRD) and Rapid Cancer Registration Dataset (RCRD). Data cuts from these datasets were retrieved regularly between April 2022 and September 2023. Four data fields were investigated if recorded: International Classification of Diseases, 10th Revision (ICD-10) code, International Classification of Diseases for Oncology, 3rd Edition (ICD-O-3) morphology code, cancer stage, and Tumour, Nodes, and Metastasis (TNM) classification. ICD-10 completeness was 100% for each dataset, while completeness of the other variables varied between datasets. Concordance was highest between SYMPLIFY and registry data for ICD-10 code and broad morphology groupings but was less so for specific ICD-O-3 code, cancer stage, and TNM classification. The SYMPLIFY dataset reached full completion at 12 months post-enrolment, compared to 13 months for NCRD. I report comparable completeness and timeliness between on-site data collected from the SYMPLIFY study and national cancer registries, as well as high concordance for ICD-10 code and ICD-O-3 morphology groupings. These findings suggest that diagnostic cancer data from central registries in England and Wales may be able to support clinical research and help alleviate the resource burden associated with cancer research.

Authors: Jackson, A

• DOI: 10.5287/ora-xmqand4j1
• Type of award: MSc by Research
• Level of award: Masters
• Awarding institution: University of Oxford
• Language: English
• Keywords: cancer research; cancer registry
• Subjects: cancer registry data; cancer