Defining Excellence: The First Core Set of Quality Indicators for the European Paediatric Surgical Audit on Hirschsprung's Disease Care
| Author | Affiliation | |||||
|---|---|---|---|---|---|---|
Rossi, Daniel | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Erasmus University Medical Center-Sophia Children's Hospital | NL | Karolinska Institutet | SE |
Granström, Anna Löf | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Karolinska Institutet | SE | ||
Pakarinen, Mikko | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | New Children's Hospital, Helsinki University Central Hospital and University of Helsinki | FI | ||
Bjørnland, Kristin | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Oslo University Hospital and University of Oslo | NO | ||
de Blaauw, Ivo | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Radboud UMC-Amalia Children's Hospital | NL | ||
Ellebæk, Mark | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Odense University Hospital | DK | University of Southern Denmark | DK |
Leon, Francesco Fascetti | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Padua University Hospital | IT | ||
Gloudemans, Dirk-Jan | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Dutch Association for Hirschsprung's Disease | NL | ||
Prato, Alessio Pini | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | The Children Hospital | IT | ||
Rolle, Udo | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | University Hospital Frankfurt | DE | ||
Schwarzer, Nicole | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | SoMA, The German Patient Support Organization for Anorectal Malformations and Hirschsprung Disease | DE | ||
Tabbers, Merit | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Emma Children's Hospital, Amsterdam University Medical Centers | NL | ||
Vilanova, Alejandra | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | La Paz University Hospital Children Hospital | ES | ||
Wijnen, Rene | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Erasmus University Medical Center-Sophia Children's Hospital | NL | ||
Sloots, Cornelius E J | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Erasmus University Medical Center-Sophia Children's Hospital | NL | ||
Wester, Tomas | European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) | NL | Karolinska Institutet | SE | ||
EPSA|ERNICA Registry Group and collaborative authors |
| Other(s) | |||
|---|---|---|---|
Tyrėjas / Originator | LT | ||
Dagilytė, Rūta | Tyrėjas / Originator | Viešoji įstaiga Vilniaus universiteto ligoninė Santaros klinikos | LT |
| Date | Volume | Issue | Start Page | End Page |
|---|---|---|---|---|
2025-01-25 | 114 | 6 | 1464 | 1477 |
Indėliai: 16 autorių + 83 (iš jų 2 iš LT). Visų skirtingų šalies verslo įstaigų (įmonių) ir užsienio institucijų prieskyrų skaičius - 98.
This study aimed to develop a universally applicable core set of quality indicators for Hirschsprung's disease care through a consensus-driven process, to standardise and improve care quality across Europe.
A modified Delphi method was used to achieve consensus among healthcare professionals (HPs) and patient representatives (PRs) across Europe. Participants completed three rounds of anonymous surveys, rating quality indicators for Hirschsprung's disease care. A systematic literature review informed the initial item list. Results were analysed using predefined criteria, and a final consensus meeting established the core set of indicators.
An international panel of 8 PRs and 96 multidisciplinary health care professionals representing 59 European hospitals completed all questionnaires, eventually including 12 baseline characteristics and 39 indicators. Six of the top 10 indicators were commonly prioritised by both groups. The remaining items were refined through debate and finalised during a consensus meeting.
This study established a core set of 12 baseline characteristics and 14 quality indicators for evaluating Hirschsprung's disease care. These indicators will support benchmarking and continuous quality improvement within the European Paediatric Surgical Audit framework, ultimately enhancing outcomes and care for children with Hirschsprung's disease.
| URI | Access Rights |
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| PMC | Viso teksto dokumentas (atviroji prieiga) / Full Text Document (Open Access) |
| https://hdl.handle.net/20.500.12512/254425 |
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The European Commission funded the EPSA|ERNICA Registry in the 3rd Health Program |