Objective: To describe clinical pathways for infants with congenital diaphragmatic hernia (CDH) and short-term outcomes.
Design: Retrospective observational cohort study using the UK National Neonatal Research Database (NNRD).
Patients: Babies with a diagnosis of CDH admitted to a neonatal unit in England and Wales between 2012 and 2020.
Objectives: Develop a score summarising how successfully a child with any surgical condition has been treated, and test the clinical validity of the score.
Design: Discrete choice experiment (DCE), and secondary analysis of data from six UK-wide prospective cohort studies.
Participants: 253 people with lived experience of childhood surgical conditions, 114 health professionals caring for children with surgical conditions and 753 members of the general population completed the DCE.
Core outcome sets (COSs) provide a mechanism to guide researchers and clinicians when deciding which outcomes to report in research related to a specific clinical condition or intervention. The intention behind creating a COS for a specific condition is to improve the reporting of important and meaningful outcomes, thus enhancing the relevance of research. Additionally, a COS helps facilitate comparison of outcomes between different clinical studies and reduces research waste.
View Article and Find Full Text PDFBackground: Core outcomes sets are increasingly used to define research outcomes that are most important for a condition. Different consensus methods are used in the development of core outcomes sets; the most common is the Delphi process. Delphi methodology is increasingly standardised for core outcomes set development, but uncertainties remain.
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