Clinical trials and outcome reporting in congenital diaphragmatic hernia overlook long-term health and functional outcomes-A plea for core outcomes

Lewis, Leonie, Sinha, Ian and Losty, Paul D ORCID: 0000-0003-0841-5879 (2022) Clinical trials and outcome reporting in congenital diaphragmatic hernia overlook long-term health and functional outcomes-A plea for core outcomes. ACTA PAEDIATRICA, 111 (8). pp. 1481-1489.

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Official URL: http://dx.doi.org/10.1111/apa.16409

Abstract

<h4>Aim</h4>To review the selection, measurement and reporting of outcomes in studies of interventions in Congenital Diaphragmatic Hernia (CDH).<h4>Methods</h4>We searched the Cochrane Central Register of Controlled Trials from 2000-2020 for randomised trials and observational studies. Outcomes reported were classified into seven key domains modelled on the patient journey.<h4>Results</h4>Our search yielded 118 papers; 27 were eligible. The most frequent domains measured were 'short-term markers of disease activity' (17/27), whereas long-term outcomes (3/27) and outcomes relating to functional health status (8/27) were reported infrequently. There was heterogeneity in the methods and timing of outcome reporting. Primary outcomes were varied and not always clearly stated.<h4>Conclusion</h4>Long-term health and functional outcomes involving interventional studies in CDH are infrequently reported, which hinders the process of shared decision-making and evidence-based healthcare. A CDH core outcome set is needed to standardise outcome reporting that is relevant to both families and healthcare teams.

Item Type:	Article
Uncontrolled Keywords:	Humans, Hernias, Diaphragmatic, Congenital, Outcome Assessment, Health Care
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Clinical Directorate
Depositing User:	Symplectic Admin
Date Deposited:	17 May 2022 07:40
Last Modified:	18 Jan 2023 21:02
DOI:	10.1111/apa.16409
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3154948