Palmér Sofia, Blomqvist Carl, Holmqvist Marit, Lindman Henrik, Lambe Mats, Ahlgren Johan
Department of Oncology, Faculty of Medicine and Health, Örebro University Hospital, Örebro University, Örebro, SE-70182, Sweden.
Comprehensive Cancer Center, Helsinki University Hospital and University of Helsinki, Helsinki, Finland.
BMC Cancer. 2024 Mar 11;24(1):329. doi: 10.1186/s12885-024-12073-4.
Population-based cancer quality registries are of great importance for the improvement of cancer care. However, little is known about the quality of recurrence data in cancer quality registries. The aim of this study was to evaluate data quality in the regional Breast Cancer Quality Registry of Central Sweden, with emphasis on the validity of recorded information on recurrence.
Validation by re-abstraction was performed on a random sample of 800 women with primary invasive breast cancer stage I-III diagnosed between 1993 and 2010, of which 400 had at least one registered recurrence and 400 had no registered recurrence. Registry data were compared with data from medical records. Exact agreement, correlation and kappa values, sensitivity and specificity were calculated.
Seven hundred forty-seven women (93%) were available for analysis. Exact agreement was high for diagnostics, tumor characteristics, surgery, and adjuvant oncological treatment (90% or more for most variables). The registry's sensitivity was low for regional recurrence (47%), but higher for local and distant recurrence (80% and 75%), whereas specificity was overall high (≥ 95%). Combining all recurrence categories irrespective of localization improved sensitivity to 90% with a specificity of 91%. In 87% of women, the date of first recurrence according to medical records fell within ± 90 days of the date recorded in the registry.
While the quality of data in the regional Breast Cancer Quality Registry was generally high, data accuracy on recurrences was lower. The overall precision of identifying any recurrence, irrespective of localization, was high. However, the accuracy of classification of recurrences (local, regional or distant) was lower, with evidence of underreporting for each of the recurrence categories. Given the importance of recurrence-related outcomes in the assessment of quality of care, efforts should be made to improve the reporting of recurrences.
基于人群的癌症质量登记对于改善癌症护理至关重要。然而，对于癌症质量登记中复发数据的质量了解甚少。本研究的目的是评估瑞典中部地区乳腺癌质量登记的数据质量，重点是记录的复发信息的有效性。
对1993年至2010年间诊断为I-III期原发性浸润性乳腺癌的800名女性的随机样本进行重新提取验证，其中400名至少有一次登记的复发，400名没有登记的复发。将登记数据与病历数据进行比较。计算精确一致性、相关性和kappa值、敏感性和特异性。
747名女性（93%）可供分析。诊断、肿瘤特征、手术和辅助肿瘤治疗的精确一致性较高（大多数变量的精确一致性为90%或更高）。该登记对区域复发的敏感性较低（47%），但对局部和远处复发的敏感性较高（分别为80%和75%），而特异性总体较高（≥95%）。将所有复发类别合并，无论其定位如何，敏感性提高到90%，特异性为91%。根据病历，87%的女性首次复发日期在登记记录日期的±90天内。
虽然该地区乳腺癌质量登记的数据质量总体较高，但复发数据的准确性较低。识别任何复发（无论其定位如何）的总体精度较高。然而，复发（局部、区域或远处）分类的准确性较低，有证据表明每个复发类别均存在报告不足的情况。鉴于复发相关结果在护理质量评估中的重要性，应努力改善复发的报告。
