Health-related quality of life and ambulation in children with myelomeningocele in a Swedish population

Aim: The aim was to study health-related quality of life (HRQL) in Swedish children with myelomeningocele (MMC) with respect to ambulatory function. Methods: A physical examination of the lower limbs was performed, and occurrence of orthopaedic deformities and shunted hydrocephalus was documented. A questionnaire on general health-related quality of life Child Health Questionnaire-50 Parent Form (CHQ-PF50) was answered by the parents of 62 children, mean age 12.5 (3.1) years. Results: The non-ambulatory children had significantly more frequent spasticity in the lower limbs, more often joint contractures as well as hip dislocation or spine deformity compared with ambulating patients. Thirty-two per cent of the ambulators managed without wheelchair use. All non-ambulators were wheelchair users, of which 60% used both a manual and a powered wheelchair. The children with MMC perceived significantly lower HRQL of all subscales of CHQ compared with the healthy control group. Physical function was significantly higher in ambulatory patients, PF = 57.1 compared with 22.2 for non-ambulatory patients. Conclusion: A Swedish population of children with MMC perceived lower HRQL compared with healthy children, but similar HRQL irrespective of ambulatory function except for the physical domain was reported.