Quality of life and functional disability in skeletally mature patients with myelomeningocele-related spinal deformity

Abstract

The purpose of the study was to assess the quality of life, physical function, self-motivation, and self-perception of skeletally mature patients with spina bifida and scoliosis. This is a prospective study on 19 skeletally mature patients with a mean age of 21.4 years. Several questionnaires were used for the study: Activities Scale for Kids, Quality of Life in Spina Bifida Questionnaire, The Health Self-Determinism Index for Children, Harter's Self-Perception Profile for Adolescents, and the Spina Bifida Spine Questionnaire. This study found no association between spinal deformity or other features related to spina bifida and self-perception, motivation, and overall physical function. More severe scoliosis affects quality of life and is related to the degree of pelvic obliquity and the age of the patients. Individuals with motor-level dysfunction below L3 had significantly better overall physical function compared with those with a higher level of lesions. This was the only factor found to affect physical function. Our findings suggest that most limitations in patients with spina bifida are not related to the degree of scoliosis but to other associated disabilities.