Standardized Outcome Measures for Preterm and Hospitalized Neonates: An ICHOM Standard Set

Esther Schouten*, Johanna Haupt, Jessily Ramirez, Nick Sillett, Christina Nielsen, Anna Clarke, Lucy Matkin, Andria Joseph, Jasper Been, Ilein Bolaños González, Jeanie Cheong, Mandy Daly, Haresh Kirpalani, Silke Mader, Arti Maria, Alicia Matijasevich, Rashmi Mittal, Kunda Mutesu-Kapembwa, Eleni Vavouraki, James WebbeDieter Wolke, Jennifer Zeitlin, Andreas Flemmer

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Introduction: Approximately, one in ten infants is born preterm or requires hospitalization at birth. These complications at birth have long-term consequences that can extend into childhood and adulthood. Timely detection of developmental delay through surveillance could enable tailored support for these babies and their families. However, the possibilities for follow-up are limited, especially in middle- and low-income countries, and the tools to do so are either not available or too expensive. A standardized and core set of outcomes for neonates, with feasible tools for evaluation and follow-up, could result in improving quality, enhance shared decision-making, and enable global benchmarking. Methods: The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group, which was comprised of 14 health-care professionals (HCP) and 6 patient representatives in the field of neonatal care. An outcome set was developed using a three-round modified Delphi process, and it was endorsed through a patient representative-validation survey and an HCP survey. Results: A literature review revealed 1,076 articles and 26 registries which were screened for meaningful outcomes, patient-reported outcome measures, clinical measures, and case mix variables. This resulted in a neonatal set with 21 core outcomes covering three domains (physical, social, and mental functioning) and 14 tools to assess these outcomes at three timepoints. Discussion: This set can be implemented globally and it will allow comparison of outcomes across different settings and countries. The transparent consensus-driven development process which involved stakeholders and professionals from all over the world ensures global relevance.

Original languageEnglish
Pages (from-to)443-454
Number of pages12
Issue number4
Publication statusPublished - 1 Jul 2022

Bibliographical note

Funding Information:
D.W. is the cocreator and author for the PARCA-R assessment and validation. S.M. is supported by an EFCNI sponsorship. I.B.G receives an Abbvie-In kind, a support to make an awareness campaign on prematurity and RSV. All other authors have no conflicts of interests to declare.

Publisher Copyright:
© 2022 S. Karger AG, Basel.


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