Parent assessment of quality of life of children born with craniofacial anomalies: A population-based case control study in Utah

Introduction: Quality of life (QoL) as perceived by parents and children with craniofacial anomalies (CFA) has received little attention. Understanding the challenges parents and children face is important for the medical community that cares for them. We present findings from a population-based case control study of parent perception of their child's QoL with and without CFA conducted in Utah. Methods: 99 children born between 1994-2001 with isolated CFA and their parents were recruited from the Utah Birth Defect Network, an active surveillance system of resident cases. 33 controls were randomly recruited from birth certificates. CFA included cleft lip with cleft palate (CLP, n=24), cleft lip only (CL, n=33), cleft palate only (CP, n=27), and craniosynostosis (CS, n=15). QoL was measured by the validated, disease-specific Child Oral Health Questionnaire. Wilcoxon two-sample test was used to evaluate differences in QoL scores between each phenotype and controls, stratified by age group. A score of 0 indicates perfect QoL. Results: According to parent perception, children age 5-7 with CLP, mean QoL score was 23.4 versus 11.6 among controls (P=0.001) and for age 8-11, 18.6 and 8.8 respectively (P=0.003). QoL among children age 5-7 with CL QoL was not significantly different (P=0.18), whereas among those age 8-11 there was a significant difference (P=0.006). CP was not significantly different in either age group. Discussion: Preliminary analyses indicate that CFA, as assessed by parents, impacts QoL and the impact varies by phenotype. Further analyses of quality of life as assessed by the children are needed.