Methods: 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.

Background: 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 68.9° (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° experienced more improvement 1 year after surgery than children with Cobb angle >75°.

Conclusions: HRQOL improves 1 year following spine fusion but regresses to baseline after 2 years. Caregiver burden was unchanged following spine fusion. Methods: 2.