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Poster - 63
Ocelot study: defining and measuring the core outcomes for people born with oesophageal atresia and/or tracheo-oesophageal fistula
L Gutierrez Gammino*, N Teunissen**, L Bray***, J Faulkner****, P Cullis*****, S Gorst******, R Thursfied*******
*Servicio de Cirugia Pediatrica, Hospital Pedro de Elizalde, Buenos Aires, Argentina
**Department of Pulmonology, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the Netherlands
***Edge Hill University, Liverpool, United Kingdom
****TOFS Patient Support Group, Nottingham, United Kingdom
*****Royal Hospital for Children & Young People, Edinburgh, United Kingdom
******University of Liverpool, Liverpool, United Kingdom
*******Department of Paediatric Respiratory Medicine Alder Hey Children’s Hospital NHS Foundation Trust Liverpool, United Kingdom
Introduction: A core outcome set (COS) for people born with oesophageal atresia and/or tracheooesophageal fistula (OA-TOF) was formulated with a steered focus on outcomes with international relevance (Ocelot study). For most of the 14 outcomes, heterogeneity exists in the definitions and there are numerous watts to measure such outcomes. Inorder to ensure the COS is able to improve research, each outcome must be clearly defined.
Objectives: To provide clear definitions and ways to measure each outcome from the COS.
Methods: The study was undertaken in 5 steps
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Using comprehensive literature review, one investigator drafted definitions and proposed ways to measure each outcome
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All members of the international steering group and attendees of the consensus meeting were invited to comment on this draft. All were experts in their field/had personal expertise as a person with or family member with OA_TOF. Experts worked on live document so discussion between experts was possible to add depth.
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One expert in each field was tasked with collating all comments and writing the final definition and way to measure.
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Final review and agreement by steering committee
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4 external experts not involved in the Ocelot study were asked to peer review final document for scrutiny
Results: Debate over correct term definitions and ways to measure specific outcomes highlighted challenges where ‘no gold standard exists‘ in clinical practice or health service research. With input from parents and parent support groups, agreement was attained on definition(s) and best ways to measure the 14 core outcomes for OA/TOF patients with approval from experts. This will ensure the COS is able to minimise heterogeneity in future studies, enhancing the quality of evidence based research with the aim of leading to greater knowledge, understanding and ultimately better patient care.