Health-Related Quality of Life and Care Giver Burden Following Spinal Fusion in Children With Cerebral Palsy

Study Design. A prospective longitudinal cohort. Objective. The objective of this study was to evaluate changes in caregivers' perceptions of health-related quality of life (HRQOL) and caregiver burden in children with severe cerebral palsy (CP) following spinal fusion. Summary of Background Data. Progressive scoliosis is common in nonambulatory children with CP; the utility of spine fusion has been long debated and prospective evaluations of patient reported outcomes are limited. Methods. Children 3 to 21 years old, gross motor classification system (GMFCS) IV-V CP, scheduled for spine fusion were enrolled consecutively from September 2011 to March 2014. Caregivers completed the CPCHILD and ACEND pre-operatively and at 6 weeks, 3, 6, 12, and 24 months postoperatively. Changes in CPCHILD and ACEND scores from preoperative to 1 and 2 years after surgery were assessed using paired t tests. Correlations between preoperative Cobb angle and CPCHILD and ACEND scores were evaluated using Pearson's correlation analysis. Results. Twenty-six GMFCS IV-V CP patients with severe scoliosis treated with spine fusion were included. Mean age was 14 years, 50% male, and 46% had instrumentation to the pelvis. Average preoperative Cobb angle was 68.98 (SD 25.68) with an average improvement of 76%. The CPCHILD score increased by 9.8 points above baseline [95% confidence interval (95% CI): 3.4-16.2] at 1 year postoperatively (P = 0.005). However, at 2 years, the CPCHILD score regressed to baseline (P = 0.40). ACEND scores did not change from baseline scores at 1-year (P = 0.09) and 2-year (P = 0.72) follow-up, reflecting that caregiver burden is little changed by spine fusion. There was no correlation between preoperative Cobb angle and CPCHILD score (P = 0.52) or ACEND score (P = 0.56) at 1-year or 2-year follow-up (P = 0.69, P = 0.90). Children with Cobb angle <75 degrees experienced more improvement 1 year after surgery than children with Cobb angle >75 degrees. Conclusion. HRQOL improves 1 year following spine fusion but regresses to baseline after 2 years. Caregiver burden was unchanged following spine fusion.