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Core outcomes in Neonatology: Final results of an International Delphi process involving patients, parents, healthcare professionals and researchers

Presented at the Neonatal Society 2018 Spring Meeting.

Webbe J, Modi N, Gale C, on behalf of the COIN steering group

Section of Neonatal Medicine, Imperial College London

Background: In the UK one in eight newborn babies are admitted to a neonatal unit. Neonatal research evaluates many different outcomes using a multitude of outcome measures. In neonatal medicine inconsistent outcome reporting (Wilhelm et al 2013) and selection of outcomes that are not relevant to patients’ lives (Janvier et al 2016) are two sources of research waste (Heneghan et al 2017). We have defined a neonatal core outcomes set with input from parents and former patients, healthcare professionals, and researchers.

Methods: We formed a steering group including representatives from all stakeholder groups. We systematically reviewed outcomes reported in neonatal trials and identified outcomes of importance to stakeholders through a systematic review of qualitative studies. We entered the outcomes identified into a three round international Delphi survey. Participants scored outcomes on a scale of 1 to 9 (9 being most important). We pre-specified that to be considered automatically in the core outcome set over 70% of panel members in each group should score the outcome 7-9. We recruited stakeholders online with a target of a minimum of 120 participants (30 in each group).

Results: We identified 104 outcomes in the systematic reviews. 413 people registered to participate in the Delphi process: parents/former patients=250; nurses/allied healthcare professionals=54; doctors=78 and neonatal researchers=31. Participants contributed experience from 25 countries across 6 continents. After three rounds 16 outcomes reached the pre-specified criteria for inclusion in the core outcomes set: Survival, Sepsis, Necrotising enterocolitis, Brain injury on imaging, Retinopathy of Prematurity, General gross motor ability, General cognitive ability, Visual impairment, Pain, Quality of life, Hearing impairment, Seizures, Medical errors, and Need for surgical operations. The following outcomes narrowly missed the prespecified criteria: Bronchopulmonary dysplasia, Suffering, Resuscitation at birth, Growth, General fine motor ability, Normality after discharge, General communication ability, Ability to feed themselves, and Ability to live independently.

Conclusion: A consensus meeting will be held to identify the final core outcome set using the Delphi results and future work will standardise how outcomes should be measured. The core outcome set for neonatology will standardise outcome selection in research and ensure outcomes are relevant to those most affected by neonatal care.

Corresponding author: j.webbe@imperial.ac.uk

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