Development of a lifelong core outcome set for oesophageal atresia ± tracheoesophageal fistula: the OCELOT study

Abstract

BackgroundDespite anatomical correction, people born with oesophageal atresia±tracheoesophageal fistula (OA-TOF) experience lifelong morbidity. Core outcome sets (COSs) are recognised as a means of improving research quality and, as a consequence, improving patient outcomes; one was not available for this population.ObjectiveThe scope of the study was to develop a COS for people born with OA-TOF that would be applicable regardless of age or geographic location.Study designPatient input was paramount to this study. For long-list generation, in addition to the systematic review (SR), patients and representatives were invited to participate in focus groups, interviews or complete activity packs..