Quality of life in children with velopharyngeal insufficiency.

OBJECTIVE To determine if quality of life (QOL) is affected in children with velopharyngeal insufficiency (VPI). DESIGN Interview and survey. SETTING Two university pediatric ambulatory centers. PARTICIPANTS This population-based sample included 58 children, aged 5 to 17 years, and their parents; 29 of the children were diagnosed as having VPI and 29 were age-matched normal controls. INTERVENTION Each participant (child and parent) completed 2 questionnaires: the Velopharyngeal Insufficiency Quality of Life (VPIQL), an instrument specifically designed for children with VPI, and the Pediatric Quality of Life Inventory, version 4.0 (PedsQL(4.0)), a standardized generic assessment instrument that systematically assesses the perception of health-related QOL in pediatric patients with chronic health conditions. MAIN OUTCOME MEASURES The VPIQL questionnaire assessed patients' and parents' perceptions of speech, swallowing, situational and emotional difficulty, activity limitations, and perception of the patient by others. Caregiver impact was also assessed in the parent version of the VPIQL. RESULTS The patients with VPI and their parents perceived a more statistically significant negative QOL compared with the normal controls and their parents in all domains of the VPIQL and the PedsQL(4.0). The parents of the children with VPI perceived a more negative emotional impact (P = .02), greater speech limitations (P = .05), and fewer swallowing problems (P<.001) compared with their children. CONCLUSIONS Children with VPI and their parents perceive negative QOL greater than that of normal controls and their parents. Parental proxy may be an adequate substitute in this population.