Difazio Rachel L, Vessey Judith A, Zurakowski David, Snyder Brian D
Department of Orthopedic Surgery, Boston Children's Hospital, Boston, MA, USA.
William F. Connell School of Nursing, Boston College, Chestnut Hill, MA, USA.
Dev Med Child Neurol. 2016 Mar;58(3):298-305. doi: 10.1111/dmcn.12872. Epub 2015 Aug 24.
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.
本研究旨在评估在接受矫形手术以纠正髋部或脊柱畸形后，重度非行走型脑瘫患儿的照料者对健康相关生活质量（HRQOL）的认知变化以及照料者所受的影响。
采用前瞻性纵向队列研究（n = 44）设计来测量手术前后的变化。照料者完成了《照料者优先事项及残疾儿童健康生活指数》（CPCHILD）和《神经肌肉疾病照料者体验评估》（ACEND）。数据收集时间为2011年2月至2014年2月。纳入标准为其子女年龄在3至25岁之间、患有粗大运动功能分类系统IV级和V级脑瘫且计划接受矫形手术的照料者。采用重复测量方差分析来评估手术前及术后四个时间点的变化。
44名照料者参与了研究。照料者对其子女HRQOL的认知从基线到术后12个月有改善（p<0.001）。接受脊柱手术的患者随时间推移有稳步改善，而接受髋部手术的患者在术后6周时有下降，随后稳步改善。CPCHILD的六个领域中有五个领域有改善，生活质量领域无变化。ACEND的任何领域均无变化。
照料者报告称，矫形手术后1年，HRQOL的多个领域有所改善。
