Accuracy and agreement of national spine register data for 474 patients compared to corresponding electronic patient records

Abstract

Purpose Data 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). Methods We 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). Results The 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)). Conclusion Compared 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.

Characteristics and outcomes of patients who did not respond to a national spine surgery registry

“…Therefore, the registration of relevant comorbidities by the treating surgeon may be questioned. A validation study of NORspine data found that surgeons tended to underreport relevant comorbidities and that ASA grading done by the anesthetist could be more reliable in assessing comorbidity [ 20 ]. In our study, there was no difference in the proportions of ASA grades 1 and 2 patients among non-respondents compared to respondents.…”

Complications associated to wound drainages in tumor spine surgery: a multicenter surveillance study from the German Spine Registry (DWG-Register)

“…The DWG registry does not require documentation of the final histopathological diagnosis, which might solve this problem. Furthermore, underreporting of complications has been observed previously 10 and complication rates of 12.0% (redon) respective 8.5% (no redon) seem to be unexpectedly low within this vulnerable collective of tumor patients 11 .…”

Designing a minimum data set for the information management system (registry) of spinal canal stenosis: An applied‐descriptive study

“…The second aim was to register other underlying diseases, which can negatively affect the course or treatment of the disease. In comparison to similar registry systems such as NOR spine 12 and Spine Tango, 11 more data elements have been considered for registering the disease risk factors. For example, in Spine Tango, height, weight, and cigarette smoking had been considered as risk factors 11…”

“…2 In addition, some registry systems have been created in recent years in different countries for registering vertebral column disorders, such as spinal canal stenosis. The examples include (NOR spine) 11,12 and the Swedish spine register (Swespine). 13 One of the most essential stages in designing a registry system related to a special disease is determining it's minimum data set (MDS).…”