Differences in health-related quality of life and caregiver burden after hip and spine surgery in non-ambulatory children with severe cerebral palsy.

Abstract

The aim of this study was to evaluate changes in caregivers' perceptions of health-related quality of life (HRQOL) and caregiver impact in children with severe, non-ambulatory cerebral palsy after orthopedic surgery to correct hip or spine deformities. A prospective longitudinal cohort study (n=44) design was used to measure changes before and after surgery. Caregivers completed the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) and the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). Data collection was between February 2011 and February 2014. Caregivers were included if their child was 3 to 25 years old, had cerebral palsy in Gross Motor Function Classification System levels IV and V, and was scheduled for orthopedic surgery. Analysis of variance with repeated measures was used to assess changes before and at four time points after surgery. Forty-four caregivers participated. Caregivers' perceptions of their child's HRQOL demonstrated an improvement from baseline to 12 months (p<0.001). Patients who had spine surgery demonstrated a steady improvement over time, whereas patients who had hip surgery had a decrease at 6 weeks followed by steady improvement. Improvements were noted in five of six of the CPCHILD domains, with no changes in the quality of life domain. No changes were noted in any of the ACEND domains. Caregivers report an improvement in a variety of domains of HRQOL 1 year after orthopedic surgery.