Abstract
Errors in the development of an embryo or fetus can lead to congenital malformations. An example is esophageal atresia (EA), in which the baby’s esophagus did not develop properly, resulting in the inability of food to travel from the mouth to the stomach. Several of these rare birth defects require (surgical) treatment shortly after birth, with associated symptoms often impacting patients well into adulthood. By safely collecting standardized quality data of all patients with these conditions in one place, not only within the Netherlands but also across borders, we can optimize usability of this valuable rare-disease data, draw more robust conclusions to bridge existing knowledge gaps, and better assess and even compare quality of care. The first part of this thesis focuses on standardization and centralization of data collection in rare congenital conditions, specifically of EA patients. The second part of this thesis describes the development, European implementation, optimalization, and first results of the European Pediatric Surgical Audit and its data. In this prospective patient registry, quality data of patients with one of six congenital malformations is collected, evaluated and continuously fed back to health care professionals of the participating hospitals, enabling them to compare their hospital’s care quality to that of peers, allowing for tailoring of improvement initiaves aimed at enhancing (quality of) care. The research included in this thesis represents the first step towards standardized, centralized quality data collection for rare, congenital malformations in Europe, on our way to systematically improve quality of care for these patients.
Original language | English |
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Award date | 20 Dec 2023 |
Place of Publication | Rotterdam |
Print ISBNs | 978-94-6483-598-4 |
Publication status | Published - 20 Dec 2023 |