Somathilake Gayasha, Ford Elizabeth, Armes Jo, Moschoyiannis Sotiris, Collins Michelle, Francsics Patrick, Lemanska Agnieszka
School of Health Sciences, Faculty of Health and Medical Sciences, University of Surrey, UK.
Department of Primary Care and Public Health, Brighton and Sussex Medical School, UK.
Cancer Epidemiol. 2025 Feb;94:102715. doi: 10.1016/j.canep.2024.102715. Epub 2024 Nov 30.
Primary care data in the UK are widely used for cancer research, but the reliability of recording key events like diagnoses remains uncertain. Although data linkage can improve reliability, its costs, time requirements, and sample size constraints may discourage its use. We evaluated accuracy, completeness, and date concordance of prostate cancer (PCa) diagnosis recording in Clinical Practice Research Datalink (CPRD) GOLD and Aurum compared to linked Cancer Registry (CR) and Hospital Episode Statistics (HES) Admitted Patient Care (APC) in England.
Incident PCa diagnoses (2000-2016) for males aged ≥46 at diagnosis who remained registered with their General Practitioner (GP) by age 65 and were recorded in at least one data source were analysed. Accuracy was the proportion of diagnoses recorded in GOLD or Aurum with a corresponding record in CR or HES. Completeness was the proportion of CR or HES diagnoses with a corresponding record in GOLD or Aurum.
The final cohorts for comparisons included 29,500 records for GOLD and 26,475 for Aurum. Compared to CR, GOLD was 86 % accurate and 65 % complete, while Aurum was 87 % accurate and 77 % complete. Compared to HES, GOLD was 76 % accurate and 60 % complete, and Aurum was 79 % accurate and 70 % complete. Concordance in diagnosis dates improved over time in both GOLD and Aurum, with 93 % of diagnoses recorded within a year compared to CR, and 66 % (GOLD) and 71 % (Aurum) compared to HES. Delays of 2-3 weeks in primary care diagnosis recording were observed compared to CR, whereas most diagnoses appeared at least 3 months earlier in primary care than in HES.
Aurum demonstrated better accuracy and completeness for PCa diagnosis recording than GOLD. However, linkage to HES or CR is recommended for improved case capture. Researchers should address the limitations of each data source to ensure research validity.
英国的基层医疗数据广泛用于癌症研究，但诸如诊断等关键事件记录的可靠性仍不确定。尽管数据关联可提高可靠性，但其成本、时间要求和样本量限制可能阻碍其使用。我们评估了临床实践研究数据链（CPRD）GOLD和Aurum中前列腺癌（PCa）诊断记录与英格兰关联的癌症登记处（CR）和医院 Episode 统计（HES）住院患者护理（APC）相比的准确性、完整性和日期一致性。
分析了2000 - 2016年确诊时年龄≥46岁、到65岁时仍在其全科医生（GP）处注册且记录在至少一个数据源中的男性PCa确诊病例。准确性是指在GOLD或Aurum中记录且在CR或HES中有相应记录的诊断比例。完整性是指在CR或HES中诊断且在GOLD或Aurum中有相应记录的比例。
用于比较的最终队列包括GOLD的29,500条记录和Aurum的26,475条记录。与CR相比，GOLD的准确性为86%，完整性为65%，而Aurum的准确性为87%，完整性为77%。与HES相比，GOLD的准确性为76%，完整性为60%，Aurum的准确性为79%，完整性为70%。GOLD和Aurum的诊断日期一致性随时间推移均有所改善，与CR相比，93%的诊断记录在一年内，与HES相比，GOLD为66%，Aurum为71%。与CR相比，观察到基层医疗诊断记录延迟2 - 3周，而大多数诊断在基层医疗中出现的时间比在HES中至少早3个月。
Aurum在PCa诊断记录方面比GOLD表现出更好的准确性和完整性。然而，建议与HES或CR进行关联以改善病例捕获。研究人员应解决每个数据源的局限性以确保研究有效性。
