PT  - JOURNAL ARTICLE
AU  - Sharon Ding
AU  - Emma J Mew
AU  - Alyssandra Chee-A-Tow
AU  - Martin Offringa
AU  - Nancy J Butcher
AU  - Gregory P Moore
TI  - Neurodevelopmental outcome descriptions in cohorts of extremely preterm children
AID  - 10.1136/archdischild-2019-318144
DP  - 2020 Sep 01
TA  - Archives of Disease in Childhood - Fetal and Neonatal Edition
PG  - 510--519
VI  - 105
IP  - 5
4099  - http://fn.bmj.com/content/105/5/510.short
4100  - http://fn.bmj.com/content/105/5/510.full
SO  - Arch Dis Child Fetal Neonatal Ed2020 Sep 01; 105
AB  - Background and objectives Caregivers and clinicians of extremely preterm infants (born before 26 weeks’ gestation) depend on long-term follow-up research to inform clinical decision-making. The completeness of outcome reporting in this area is unknown. The objective of this study was to evaluate the reporting of outcome definitions, selection, measurement and analysis in existing cohort studies that report on neurodevelopmental outcomes of children born extremely preterm.Methods We evaluated the completeness of reporting of ‘cognitive function’ and ‘cerebral palsy’ in prospective cohort studies summarised in a meta-analysis that assessed the effect of preterm birth on school-age neurodevelopment. Outcome reporting was evaluated using a checklist of 55 items addressing outcome selection, definition, measurement, analysis, presentation and interpretation. Reporting frequencies were calculated to identify strengths and deficiencies in outcome descriptions.Results All 14 included studies reported ‘cognitive function’ as an outcome; nine reported both ‘cognitive function’ and ‘cerebral palsy’ as outcomes. Studies reported between 26% and 46% of the 55 outcome reporting items assessed; results were similar for ‘cognitive function’ and ‘cerebral palsy’ (on average 34% and 33% of items reported, respectively). Key methodological concepts often omitted included the reporting of masking of outcome assessors, methods used to handle missing data and stakeholder involvement in outcome selection.Conclusions The reporting of neurodevelopmental outcomes in cohort studies of infants born extremely preterm is variable and often incomplete. This may affect stakeholders’ interpretation of study results, impair knowledge synthesis efforts and limit evidence-based decision-making for this population.