Abstract
PurposeData quality is essential for all types of research, including health registers. However, data quality is rarely reported. We aimed to assess the accuracy of data in a national spine register (NORspine) and its agreement with corresponding data in electronic patient records (EPR).MethodsWe compared data in NORspine registry against data in (EPR) for 474 patients operated for spinal stenosis in 2015 and 2016 at four public hospitals, using EPR as the gold standard. We assessed accuracy using the proportion correctly classified (PCC) and sensitivity. Agreement was quantified using Kappa statistics or interaclass correlation coefficient (ICC).ResultsThe mean age (SD) was 66 (11) years, and 54% were females. Compared to EPR, surgeon-reported perioperative complications displayed weak agreement (kappa (95% CI) = 0.51 (0.33–0.69)), PCC of 96%, and a sensitivity (95% CI) of 40% (23–58%). ASA classification had a moderate agreement (kappa (95%CI) = 0.73 (0.66–0.80)). Comorbidities were underreported in NORspine. Perioperative details had strong to excellent agreements (kappa (95% CI) ranging from 0.76 ( 0.68–0.84) to 0.98 (0.95–1.00)), PCCs between 93% and 99% and sensitivities (95% CI) between 92% (0.84–1.00%) and 99% (0.98–1.00%). Patient-reported variables (height, weight, smoking) had excellent agreements (kappa (95% CI) between 0.93 (0.89–0.97) and 0.99 (0.98–0.99)).ConclusionCompared to electronic patient records, NORspine displayed weak agreement for perioperative complications, moderate agreement for ASA classification, strong agreement for perioperative details, and excellent agreement for height, weight, and smoking. NORspine underreported perioperative complications and comorbidities when compared to EPRs. Patient-recorded data were more accurate and should be preferred when available.
Highlights
In clinical research, it is crucial to question how true and accurate data are; data validity and accuracy assessments are rarely published explicitly
In this cross-sectional study, we reviewed electronic patient records (EPRs) of patients operated for lumbar spinal stenosis (LSS) who consented and responded to NORspine between January 1, 2015, and December 31, 2016
The study population had more smokers and had fewer perioperative complications than the total spinal stenosis population registered in NORspine (Table 1)
Summary
It is crucial to question how true and accurate data are; data validity and accuracy assessments are rarely published explicitly. National medical registries collect large-scale data during the dynamic workflow of daily clinical practice and have become essential sources of evidence-based medicine and health care policies. It is essential to periodically assess the quality of register data reported by healthcare personnel and patients by validating it against other sources of data. Some studies are reporting good validity of medical and cancer registries [4,5,6]. A recent validation study of a German spine registry (DWG) showed high inaccuracy [7] and the authors recommended against using these register data
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