The Quality of Life of Children with Myelomeningocele: A Cross-Sectional Preliminary Study.

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 (PedsQLTM 4.0) and a Study-Specific Questionnaire (SSQ).

RESULTS

The overall PedsQLTM 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.