title: Health-Related Quality of Life and Care Giver Burden Following Spinal Fusion in Children With Cerebral Palsy.
abstract: 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.
authors: Orthopedic Center, Boston Children's Hospital, Boston, MA.
authors: Rachel L
authors: RL
authors: DiFazio
authors: Orthopedic Center, Boston Children's Hospital, Boston, MA.
authors: Patricia E
authors: PE
authors: Miller
authors: William F. Connell School of Nursing, Boston College, Chestnut Hill, MA.
authors: Judith A
authors: JA
authors: Vessey
authors: Harvard Medical School, Director Cerebral Palsy Center, Boston Children's Hospital, Boston, MA.
authors: Brian D
authors: BD
authors: Snyder
mesh_terms: D000293:Adolescent; D017028:Caregivers; D002547:Cerebral Palsy / Q000150:complications*; D002648:Child; D017281:Cost of Illness; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D011446:Prospective Studies; D011788:Quality of Life; D012600:Scoliosis / Q000209:etiology / Q000601:surgery*; D013123:Spinal Fusion; D055815:Young Adult