Longitudinal parental perceptions of spinal fusion for neuromuscular spine deformity in patients with totally involved cerebral palsy.

Retrospective surveys of caregivers of patients with totally involved cerebral palsy who are undergoing arthrodesis for spine deformity have demonstrated satisfaction with results but are subject to retrospective bias. The Pediatric Orthopaedic Society of North America outcomes questionnaire was prospectively administered to parents of patients with consecutively presenting, totally involved cerebral palsy before spinal fusion, 6 months after spinal fusion, and 1 year after spinal fusion. Review of medical records determined complication rates. Parents of 20 consecutive patients completed preoperative questionnaires. Ten of these completed questionnaires 6 months and 1 year postoperatively, and seven more completed only 1-year postoperative questionnaires. There were no significant changes between preoperative and postoperative assessments of physical function, school absence, comorbidities, and parental health. Patient pain, happiness, frequency of feeling sick and tired, and parental satisfaction improved significantly by 1 year postoperatively. All but pain and happiness were significantly improved by 6 months postoperatively, also. The presence of complications did not significantly affect questionnaire results. This prospective study substantiates the subjective gains noted in previous retrospective studies of spinal fusion for neuromuscular spine deformity in cerebral palsy.