Department of Abdominal Surgery, Helsinki University Hospital and the University of Helsinki, Helsinki, Finland.
Finnish Cancer Registry, Institute for Statistical and Epidemiological Cancer Research, Helsinki, Finland.
Scand J Gastroenterol. 2021 Mar;56(3):247-251. doi: 10.1080/00365521.2020.1867893. Epub 2021 Jan 6.
The population-based Finnish Cancer Registry (FCR) is an important resource for research and healthcare politics in Finland. The aim of this study was to validate the accuracy of the colorectal cancer (CRC) data within the FCR.
FCR data are based on independent cancer report forms (CRFs) from both clinicians and pathologists. Data from patients diagnosed with CRC during a randomized, population-based CRC screening program between 2004 and 2012 were extracted from the FCR and compared to data extracted from the original clinical patient records of these individuals by two gastrointestinal surgeons. The study focused on tumour characteristics and primary treatment. Accuracy was measured by calculating Cohen's kappa coefficient (κ), which considers the possibility of agreement by chance.
Altogether, 1475 patients were studied. κ was 0.74 for stage, 0.87 for tumour location (right/left), 0.78 for a more detailed location, 0.72 for tumour histology, 0.46 for surgical removal of the primary tumour, and 0.43 for chemotherapy. Among those who underwent surgery, the radicality of surgical treatment had a κ of 0.24. In total, 173 (12%) patients were lacking a CRF from a clinician.
The FCR data had good accuracy regarding tumour characteristics, but poor accuracy in treatment information. The main reason for this suboptimal accuracy was missing CRFs from treating clinicians. Awareness of these findings is crucial when research and decision making is based on FCR data. Measures have since been taken to improve the completeness of FCR recording.
基于人群的芬兰癌症登记处（FCR）是芬兰研究和医疗保健政策的重要资源。本研究的目的是验证 FCR 中结直肠癌（CRC）数据的准确性。
FCR 数据基于临床医生和病理学家独立的癌症报告表（CRF）。从 2004 年至 2012 年期间，通过一项基于人群的 CRC 筛查计划诊断为 CRC 的患者的数据从 FCR 中提取出来，并由两位胃肠外科医生从这些患者的原始临床病历中提取数据进行比较。研究重点是肿瘤特征和主要治疗方法。准确性通过计算 Cohen 的kappa 系数（κ）来衡量，该系数考虑了偶然同意的可能性。
共有 1475 名患者入组。分期的κ值为 0.74，肿瘤位置（右/左）的κ值为 0.87，更详细位置的κ值为 0.78，肿瘤组织学的κ值为 0.72，原发性肿瘤手术切除的κ值为 0.46，化疗的κ值为 0.43。在接受手术的患者中，手术治疗的彻底性κ值为 0.24。总共 173 名（12%）患者缺少临床医生的 CRF。
FCR 数据在肿瘤特征方面具有较好的准确性，但在治疗信息方面准确性较差。这种次优准确性的主要原因是缺乏治疗临床医生的 CRF。在基于 FCR 数据进行研究和决策时，了解这些发现至关重要。此后已采取措施提高 FCR 记录的完整性。
