• quality of life
• extremely preterm

Gire et al examine the quality of life (QoL) of French primary school-age children born extremely preterm (EP), without disabilities.1 EP birth is usually defined as birth <28 completed weeks’ pregnancy, and accounts for <1% of all births, and about 5% of all preterm births. Most children born preterm are moderate to late preterm. However, children born EP have been followed up in international cohort studies for many years, and are well recognised as being at high risk of mortality, morbidity and adverse long-term neurodevelopmental and metabolic outcomes. As these children grow into adulthood, a rich body of literature is emerging, describing their self-reported and observer-reported QoL: an important adjunct to the medical and psychological outcome measures that are deemed important by clinicians and researchers.

Gire et al report that this cross-sectional multicentre study from five level III neonatal hospitals includes 20% of children born EP in France. Importantly, both carers and children provide data, and these data were collected as part of a full-day assessment of health and development. Children with developmental disabilities (7.5%) were excluded, and 36% of those eligible were lost to follow-up, resulting in a response rate of 64% of those who met inclusion criteria. These QoL data were compared with French population data as a reference as the study did not concurrently recruit a control group. Both EP children without disabilities and their carers reported several areas of reduced QoL compared with the reference data. Compared with French population data, the EP children report most concerns with peer relationships, self-esteem and leisure activities, while their carers report most concerns with psychological well-being, schoolwork and vitality. …