Caregiver perceptions and health-related quality-of-life changes in cerebral palsy patients after spinal arthrodesis

Study Design. A retrospective analysis of a prospective registry. Objective. Our objective was to prospectively assess caregivers' perceptions regarding changes in the health-related quality of life (HRQL) of patients with cerebral palsy (CP) after spinal arthrodesis. We assessed caregiver perceptions from three perspectives: 1) qualitative assessment of changes in global quality of life, comfort, and health; 2) relative valuation of spine surgery versus other common interventions in CP patients; and 3) quantitative changes in HRQL scores. Summary of Background Data. Studies of children with CP who undergo surgical treatment of spinal deformity have focused largely on radiographic changes. Methods. We queried a multicenter prospective registry of CP patients with level IV or V motor function according to the Gross Motor Function Classification System who were treated with spinal arthrodesis, and whose caregivers completed preoperative and 2-year postoperative qualitative and quantitative HRQL surveys. A total of 212 caregivers and their patients were included in the study. Results. At 2-year follow-up, most caregivers reported that patients' global quality of life, comfort, and health were "a lot better" after spinal arthrodesis. Spinal arthrodesis was ranked as the most beneficial intervention in the patients' lives by 74% of caregivers, ahead of hip, knee, and foot surgeries and baclofen pump insertion. Gastrostomy tube insertion was the only intervention ranked superior to spinal arthrodesis in terms of impact. Quantitative HRQL scores improved significantly during 2-year follow-up across various domains. Conclusion. In qualitative and quantitative HRQL assessments, caregivers reported overall improvement in patients' lives after spinal arthrodesis. Caregivers ranked spine surgery as the most beneficial intervention in the patients' lives, secondary only to gastrostomy tube insertion.