Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy Article Summary
Title: Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy
Purpose: The purpose of this study is to determine how health-related quality of life (HRQoL) and caregiver burden is effected following a hip reconstruction or spinal fusion in non-ambulatory children with spastic cerebral palsy.
Population: The study population included children with CP in GMFCS levels IV and V and their respective parent/caregiver. A total of 69 participants were studied, with 43 undergoing hip reconstruction and 26 undergoing spinal fusion. 40 were male and 29 were female with the mean age being 11y 6mo and ranging from 3y 10mo to 20y 7mo. The average of age of caregivers for children of hip surgery were 40y 10mo and for spinal surgery was 45y 5mo.
Methods: A prospective, longitudinal study was performed over a course of 5 years and determining the changes of HRQoL and caregiver burden following each surgery type. The parent reported measures of HRQoL and caregiver burden were taken before and at 6 weeks, then at 3, 6, 9, 12, 24, and 60 months post-surgery. To determine the measures throughout the study the Caregiver priorities and Child Health Index of life with Disabilities (CPCHILD) and the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND). After 5 years or more the scores were then compared to pre-surgery levels using paired Student’s t-tests. A serial outcome trajectories were determined by linear mixed modeling.
Outcome measures: To determine HRQoL the Caregiver priorities and Child Health Index of life with Disabilities was used and for caregiver burden the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) was used.
Intervention: Hip reconstruction or spinal fusion was performed to determine the effect on HRQoL and caregiver burden.
Results: Post-op there were clinically significant improvements in HRQoL with an average increase in 7.6 points. Hip reconstruction showed to provide a greater benefit compared to spinal fusion. Other improvements included positioning, transferring/mobility, comfort, and overall health. However, after 5 years or more there were changes or improvement to caregiver burden due to the children still remaining to be maximally dependent with activities.
Strength/Limitations: A strength of this study was being able to look at different domains within HRQoL and caregiver burden. The CPCHILD places an emphasis of observable behaviors which are reported by the parent which makes measuring HRQoL and big limitation as it is designed for children who unable to self-report. Other limitations include the retrospective study design, the small sample size, inadequate statistical power and lack of a control group for better comparison.
Conclusion: Overall, treatment using hip reconstruction and spinal fusion demonstrated increases HRQoL but showed no impact to caregiver burden. The information provided can help parents and caregivers explore the various pros and cons of surgical or non-surgical interventions for children with CP.
Reference: DiFazio RL, Vessey JA, Miller PE, Snyder BD, Shore BJ. Health-related quality of life and caregiver burden after hip reconstruction and spinal fusion in children with spastic cerebral palsy. Dev Med Child Neurol. 2022;64(1):80-87. doi:10.1111/dmcn.14994
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I think that it’s interesting that the surgeries improved the children’s HRQoL but caregiver burden was unaffected. I would be interested to see what areas lacked improvement despite the surgery that limited improvements to caregiver burden. If the areas where no improvement were noted could be linked to increased caregiver burden, specific interventions might be possible to increase both aspects.