Analysis of Data-Collection Methods for an Acute Stroke Care Registry

This study aims to assess and compare the completeness and reliability of data collected by prospective and retrospective methods for the Paul Coverdell National Acute Stroke Registry. The prototypes consisted of eight states that used the same data elements but differed in their collection approach. Three prototypes employed retrospective case ascertainment (n=1218), and five prototypes used prospective or a combination of prospective and retrospective case ascertainment (n=1602). RTI International performed an audit analysis of the eight prototypes. Completeness, exact match, and discrepancy analyses were performed with data elements grouped into 12 categories for this analysis. A sample of 2820 (37.6%) from a total of 7494 records from 91 hospitals was studied. The “in-hospital complications” section had the highest percentage of completeness (99.6%), followed by “demographic data” (97.7%), and “in-hospital diagnostic procedures” (93.4%). The section with the lowest percentage of completeness was “thrombolytic treatment” (53.5%), followed by “reasons for nontreatment with thrombolytics” (57.1%), and “signs and symptoms onset” (63.5%). Across all prototype elements, exact matches with audit data ranged from 62.8% to 95.9%. Documentation of the date/time of stroke onset and of arrival in the emergency department had a high number of discrepancies with audit data, with exact match percentages of 69.7% and 64.5%, respectively. No significant difference was found between retrospective and prospective case ascertainment in completeness or matching with audit data. Combined retrospective and prospective data-collection approaches for different types of data elements may be best in terms of both completeness and accuracy.