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Caregiver Perceptions and Health-Related Quality-of-Life Changes in Cerebral Palsy Patients After Spinal Arthrodesis

Jain, Amit MD; Sullivan, Brian T. BS; Shah, Suken A. MD; Samdani, Amer F. MD; Yaszay, Burt MD§; Marks, Michelle C. MA, PT; Sponseller, Paul D. MD

doi: 10.1097/BRS.0000000000002508
DEFORMITY
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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.

Level of Evidence: 2

Department of Orthopaedic Surgery, The Johns Hopkins University, Baltimore, MD

Department of Orthopedic Surgery, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE

Department of Orthopaedic Surgery, Shriners Hospitals for Children, Philadelphia, PA

§Department of Orthopedics, Rady Children's Hospital of San Diego, San Diego, CA

Setting Scoliosis Straight Foundation, San Diego, CA.

Address correspondence and reprint requests to Paul D. Sponseller, MD, Department of Orthopaedic Surgery, The Johns Hopkins University, 601 N Caroline St, Baltimore, MD 21287; E-mail: psponse@jhmi.edu

Received 29 September, 2017

Accepted 9 November, 2017

The manuscript submitted does not contain information about medical device(s)/drug(s).

Setting Scoliosis Straight received grant support from DePuy Synthes Spine and receives grant support from K2M, Inc. to support Harms Study Group Scoliosis in Cerebral Palsy research.

Relevant financial activities outside the submitted work: grants.

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