Patients' Quality of Life is Severely Impacted by Mere Discussions without Realization of the Imperative Centralization of Specialist Surgery and Subsequent After-Care
1 Department of Pediatric Surgery and Urology, Centre for Child and Youth Health, Klinikum Bremen-Mitte, Bremen, Germany.
2 SoMA (the German patient organization for Anorectal Malformations and Morbus Hirschsprung), Munich, Germany; ePAG (Patient Advocacy Group) representative in ERN eUROGEN (the European Reference Network in Rare and Complex Uro-genital Diseases and Conditions).
3 KEKS (German self-help organization for esophageal conditions), Stuttgart, Germany; ePAG (Patient Advocacy Group) representative in ERN ERNICA (the European Reference Network for Rare Inherited and Congenital Digestive and Gastrointestinal Anomalies).
4 AIMAR (Italian patient organization for anorectal malformations and morbus Hirschsprung), Rome, Italy; ePAG (Patient Advocacy Group) representative in ERN eUROGEN (the European Reference Network in Rare and Complex Uro-genital Diseases and Conditions).
5 EAT (The Federation of Esophageal Atresia and Tracheo-Esophageal Fistula Support Groups) and Esophageal Atresia and Tracheo-Esophageal Fistula Support Federation, Nottingham, United Kingdom; ePAG (Patient Advocacy Group) representative in ERN ERNICA (the European Reference Network for Rare Inherited and Congenital Digestive and Gastrointestinal Anomalies).