EN
TÜRKÇE
Poster - 29
DEVELOPING A CORE DATA SET FOR ESOPHAGEAL ATRESIA CARE AND RESEARCH
N Teunissen*, J Brendel**, R Wijnen*, S Eaton***
*Department of Pediatric Surgery, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, the Netherlands
**Centre of Pediatric Surgery, Hannover Medical School, Hannover, Germany
***University College London, UK
Introduction
With technological advances making health data collection easier than ever, there has been an increase in health data being collected for various purposes. However, this has led to considerable heterogeneity of collected variables, resulting in suboptimal comparability and usability. This is especially problematic in rare conditions such as esophageal atresia, where patient data is scarce. Additionally, minimizing administrative burden of professionals is essential. To address these challenges, this study developed a core data set comprising the minimum essential data points for evaluating and studying esophageal atresia care.
Methods
Previously, two Delphi studies were conducted. The first established a core indicator set standardizing EA care quality evaluation in Europe, while the second established a core outcome set to standardize research outcomes with a more global panel of stakeholders. These sets were combined and translated to data points, and measurement timings were determined. Joint expert reviews further refined the data points, which were then completed with the corresponding international Snomed terminology where possible. Comparability of postoperative complication data was enhanced by adding the Clavien-Madadi classification.
Results
The final core data set includes nine sections with 247 data points, covering patient variables, birth data, diagnostics, surgical details and follow-ups at one and two years. 71 variables apply to all patients. Out of these 247 variables, 131 are critical to capture the core indicator and outcome sets.
Conclusion
This EA core data exemplifies how rare disease data collection can be standardized, improving usability and comparability. Using international coding terminology assures compatibility across IT systems, paving the way for automated data extraction. This EA core data set will be implemented in the European Pediatric Surgical Audit (EPSA), a clinical audit to evaluate and improve quality of care. It will be regularly evaluated and updated, as part of the data quality cycle.