Activity level, functional health, and quality of life of children with myelomeningocele as perceived by parents.

BACKGROUND

To provide the best health care for individuals with myelomeningocele (MM), clinicians and researchers need to understand their health and functional status as well as quality of life. The literature is mixed regarding the relationship between motor level and health-related quality of life (HRQOL) for these individuals.

QUESTIONS/PURPOSES: We compared the HRQOL of children with MM at the L2 and above and L3-5 motor level and to demonstrate how having a shunt, age, and body mass index affect HRQOL instruments for these two motor level groups.

METHODS

We recruited 50 patients with MM (24 male, 26 female) with a mean age of 11.5 years (range, 5-18 years) and motor levels of L2 and above (n = 15) and L3-5 (n = 35). Guardians were interviewed using standardized functional and HRQOL tools (the Pediatric Quality of Life and the Pediatric Outcomes Data Collection Instrument); height, weight, presence of a shunt, ambulatory level, and body mass index were also collected.

RESULTS

We found a decreased HRQOL score for children with MM in the L2 and above motor level compared with those in the L3-5 motor level group. HRQOL had no correlation with body mass index and limited correlation with age. The presence of a shunt correlated with a decreased HRQOL.

CONCLUSIONS

Children with MM had deficits in HRQOL and that was associated with neurologic level and presence of a shunt.