The quality of life of children with myelomeningocele: A cross-sectional preliminary study

Abstract

Objectives: To investigate the relationship between the defects and symptoms caused by myelomeningocele (MMC) and quality of life. Design: A cross-sectional questionnaire survey. Methods: The subjects were 52 parents of children with MMC. Structured questionnaires were used: the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL™ 4.0) and a Study-Specific Questionnaire (SSQ). Results: The overall PedsQL™ 4.0 score was 56.4 (SD ± 14.7). A strong, significant negative correlation was found between the children’s age and emotional functioning. Functioning in this area deteriorated with age by a mean of 1.5 points per year of age. Children with no hydrocephalus functioned significantly better than those with this defect in the physical, social, and school areas (p < 0.05). Foot deformities significantly (p = 0.033) adversely affected the children’s physical functioning. Living in a single-parent family had no statistically significant impact on functioning in any of the areas analyzed (p > 0.05). Conclusion: Understanding the QoL of children with MMC and identifying its determinants may help in planning interventions to minimize the adverse impact of the illness.