Quality of Life of Children Born Extremely Preterm at School-Age

Background: Major disability handicaps amongst extremely premature birth (EPB) children is on the decline. To date, no studies evaluate the quality of life (QoL) of these school-aged children.

Objective: To determine the QoL of school-age children, born before 28 weeks gestation (GA), that have no major disability.

Methods: A cross-sectional, six-center study of children born at GA < 28 weeks, between 01/12/2004 and 31/12/2007; discharged alive; and without severe morbidity (cerebral palsy, autism, and severe mental retardation). These children, between 7 and 10 years old, had clinical examinations and cognitive function and QoL assessments using validated standardized questionnaires which were completed by both children and parents. QoL measurements, using 2 generic self- and hetero-evaluation questionnaires (Kidscreen-10/VSPA), were compared to French population norms.

Results: Of the 471 children included, 302 (64%) had a mean GA of 26.2 (± 0.8) weeks; a mean birth weight of 879 (± 181) grams; 140 (30%) were lost to follow-up (LFU); and 29 (6%) were lost due to parental refusal. Socio-economic characteristics of the LFU and refusal groups were significantly different from those children within the study. The mean assessment age was 8.4 (± 0.87) years. Of the 250 children having a neuro-psychological assessment, 71 (28.4%) had minor sequelae, 49 (19.6%) had moderate sequelae and 130 (52.0%) had no sequelae. The QoL (n = 302) was significantly lower than the reference population, regardless of the questionnaire used (Kidscreen 10/ VSPA), in all areas, except the children’s assessment of family relationships. Perceptions within the “parent-child" couple, as compared to the reference population, showed parents underestimated the school domain QoL, and children underestimated the QoL with friends.

Conclusion: The QoL of the EPB population without severe sequelae is low compared to the reference population.