How to measure patient and family important outcomes in extremely preterm infants: A scoping review

Aim Parents of children born preterm have identified outcomes to be measured for audit and research at 18–24 months of age: child well‐being, quality of life/function, socio‐emotional/behavioural outcomes, respiratory, feeding, sleeping, and caregiver mental health. The aim was to identify the best tools to measure these seven domains. Methods Seven working groups completed literature reviews and evaluated potential tools to measure these outcomes in children aged 18–24 months. A group of experts and parents voted on the preferred tools in a workshop and by questionnaire. Consensus was 80% agreement. Results Consensus was obtained for seven brief, inexpensive, parent friendly valid measures available in English or French for use in a minimum dataset and potential alternative measures for use in funded research. Conclusion Valid questionnaires and tools to measure parent‐identified outcomes in young preterm children exist. This study will facilitate research and collection of data important to families.