Field testing demonstrated that consultations using the aid with decision coaching were feasible, reduced decisional conflict and may facilitate shared decision-making.

Aim To update our meta‐analysis on neurodevelopmental disability rates in children born at 22–25 weeks gestation. The main outcome measure was rates of neurodevelopmental disability in survivors at age 4–10 years. Methods We used a peer‐reviewed electronic and grey search to identify articles. Two authors independently reviewed cohorts published after May 2012 with: born ≥1995 in a developed nation; assessed at 4–10 years; prospective; >65% follow‐up; definitions for neurodevelopmental disability as per the EPICure cohort; results reported by gestation. We contacted authors for clarification. Random effects meta‐analysis was used to estimate pooled proportions of neurodevelopmental disability. Within each study, the absolute change in proportions with each week was estimated and then pooled. Results We reviewed 3980 records; 21 articles were assessed and six were included. With the previous 9 cohorts, the meta‐analysis now contains 15. Rates of moderate‐to‐severe neurodevelopmental disability were as follows: 42% (95% CI 23,64%; I2 0%) at 22; 41% (95% CI 31,52%; I2 20%) at 23; 32% (95% CI 25,39%; I2 45%) at 24; 23% (95% CI 18,29%; I2 60%) at 25 weeks. The analysis shows a significant decrease in risk of moderate‐to‐severe neurodevelopmental disability between each week (8.1% (95% CI −11.8, −4.5%); I2 0%; p < 0.001). Conclusion Physicians can use this high‐quality data to support parents during decision‐making.

Background and objectivesCaregivers 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.MethodsWe 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.ResultsAll 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.ConclusionsThe 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.