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Abstract Body

The neonatal period has an important impact on lifelong wellbeing. Currently, neonatal healthcare is mainly focusing on acute (mortality) or intermediate (functional testing at two years of age) outcomes to evaluate postnatal treatment and overall health of infants previously born at risk.

The COIN-project from the UK has shown that in a high income setting, important outcomes for stakeholders like patients and parents are different from those generally accepted as important by neonatologists and that some are not accepted equally within the community ^1,2.

Supported by the European Foundation for the Care of Newborn Infants (EFCNI) and in collaboration with the International Consortium for Health Outcomes Measurement (ICHOM), we conducted a literature review and concomitant extraction of preterm and neonatal outcomes as well as their confounding case-mix variables. The purpose of this initiative was to define a minimal set of outcomes meaningful to parents of preterm infants and hospitalized neonates that are applicable in both high- and low-income settings.

The extracted outcomes underwent a previously used ICHOM review process (modified Delphi process), in which parent representatives, former preterm-born individuals and healthcare professionals from all over the world participated.

Finally, we extracted internationally accepted tools to actually measure the suggested outcomes. Again, the suggested tools underwent a thorough evaluation and Delphi-process involving all stakeholders.

The minimal outcome set and suggested tools are presented in this talk.