“CRANIOQUALITY study: Quality of life in children with non-syndromic craniosynostosis after surgery”

Background Few studies have examined the quality of life (QOL) of children undergoing surgery for non-syndromic craniosynostosis (NSC), with no age-specific assessment in France. Objective The CRANIOQUALITY study aimed to assess QOL across different age groups in children treated for non-syndromic craniosynostosis at Clermont-Ferrand University Hospital, France. Patients and methods We evaluated QOL in a cohort of children who underwent surgery for NSC between 2012 and 2020, using the PedsQL™ 4.0 and the PedsQL™ Family Impact Module. Results The study included 37 participants, with 33 PedsQL™ Family Impact Module questionnaires, 32 PedsQL™ 4.0 parent questionnaires, and 20 PedsQL™ 4.0 child questionnaires for analysis. The average family impact score was 90.74%, with mean QOL scores of 87.36% for parents and 87.93% for children. Children reported significantly higher QOL scores than a control group in the physical (p=.0206) and academic (p=.0052) dimensions, while parents noted higher QOL scores in the physical dimension (p=.0340). Conclusion Surgical treatment for NSC in children at Clermont-Ferrand University Hospital did not significantly affect their health-related QOL. QOL indicators can serve as valuable tools for assessing rare disease care quality. Age-specific QOL assessment could provide a more accurate evaluation of surgical treatment's impact on QOL.