Quality of life of extremely preterm school-age children without major handicap: a cross-sectional observational study.

OBJECTIVE: To determine the quality of life (QoL) of school-aged children who were born <28+0 weeks of gestation and who have no resultant major disabilities. DESIGN, SETTING AND PATIENTS: A cross-sectional multicentre study of extremely preterm (EPT) infants born <28+0 weeks, discharged alive and free from severe impairments (cerebral palsy, autism, major cognitive disabilities). Two generic, self-evaluation and hetero-evaluation (by parent) QoL measurement questionnaires (Kidscreen 10/VSP-A) were used and then compared with French population reference. MAIN OUTCOME MEASURES: Clinical examination, an assessment of cognitive functions and QoL between 7 and 10 years of age.
RESULTS: 40 (7.5%) severely disabled children were excluded. Among those 471 eligible, the lost to follow-up group (169 (36%)) paralleled those 302 (64%) included in the study. The mean gestational age was 26.2 (±0.8), birth weight was 879 (±181) g and the mean age was 8.4 (±0.87) years. 48% of participants had minor or moderate cognitive disabilities based on their Full-Scale Index Quotient. Working memory, attention and mental flexibility scored as low-average. Except for family relationships, the EPT QoL VSP-A and Kidscreen 10 assessment were significantly lower based on the children's and parent's perspectives. Children reported the most significant QoL decline as (1) friends' relationships, (2) self-esteem and (3) leisure, while parents indicated (1) psychological well-being, (2) schoolwork and (3) vitality.
CONCLUSION: The QoL of a school-age EPT child without severe impairment was lower relative to a reference population from both the parents' and child's points of view. This evaluation should help to better understand the long-term outcomes and to provide better support for them and their families. TRIAL REGISTRATION NUMBER: NCT01675726, pre-results. © Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.