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Introduction of a population-based vascular registry: validity of data and limitations of registration. The Finnvasc
M Lepäntalo1, J P Salenius, M Luther
1Fourth Department of Surgery, Helsinki University Central Hospital, Finland.
Insights
The Finnish Vascular Registry (Finnvasc) data from 1991 showed significant data gaps and coding inconsistencies. Cross-validation revealed that many vascular procedures were not registered, highlighting the need for improved data quality control.
Area of Science:
- Vascular Surgery
- Health Informatics
- Medical Registry Validation
Background:
- The Finnish Vascular Registry (Finnvasc) was established in 1991 to collect nationwide data on vascular procedures.
- Initial data collection aimed to capture surgical and endovascular interventions across Finland.
Purpose of the Study:
- To assess the validity and completeness of data within the Finnvasc registry during its first year of operation.
- To identify discrepancies between registered data and actual patient records.
- To evaluate the accuracy of recorded procedure classifications and outcomes.
Main Methods:
- Comparison of Finnvasc registry data with 2325 hospital records.
- Re-registration of a random sample of 233 patients treated in October 1991 across nine centers.
- Analysis of data agreement for binary, code, checklist, and numerical data points.
Main Results:
- Approximately 21% of eligible patients were not registered in Finnvasc, suggesting an underestimation of total procedures.
- High agreement (≥92%) was found for simple binary and code data, but not for checklist and numerical data.
- Discrepancies were noted in operation classification, function, and 1-month patency data.
- Significant data missingness and inadequate recording were prevalent in the first year.
Conclusions:
- The initial year of Finnvasc data collection revealed substantial deficiencies in completeness and accuracy.
- Cross-validation and random sampling are crucial for ensuring registry data integrity.
- Improvements in the coding system and data recording practices are necessary for reliable vascular registry data.
Abstract:
A study was performed to assess the validity of the data in a nationwide vascular registry, Finnvasc, initiated in 1991. Data recorded during the first year were of 3507 procedures (immediate reoperations were excluded); 2436 (69 per cent) were surgical and 1071 (31 per cent) endovascular in nature. The Finnvasc data were compared with 2325 hospital records and re-registration of a random sample of 233 patients treated during October 1991 in nine centres was also carried out. In all, 21 per cent of patients from hospitals participating in Finnvasc were not registered and so it was calculated that about 4500 vascular procedures, 3125 surgical and 1375 endovascular, were performed in Finland in 1991. This represents an average of 900,625 and 275 procedures per million population per year respectively. The non-registration rate in October was 17 per cent. Apart from operation classification, and function and patency at 1 month, all simple binary and code data at re-registration were in agreement in at least 92 per cent of cases; checklist and numerical data did not show such good conformity. During the first year of the registry many data were either missing or inadequately recorded, emphasizing the need for cross-validation and re-registration of a random sample of cases. Furthermore, the non-uniformity of coding between hospital records and the Finnvasc registry illustrated deficiencies in the current coding system.