Schneider J W, Gurucharri L M, Gutierrez A L, Gaebler-Spira D J
Northwestern University Medical School, Physical Therapy and Human Movement Sciences, Children's Memorial Hospital, Chicago, IL 60611, USA.
Dev Med Child Neurol. 2001 Sep;43(9):601-8. doi: 10.1017/s0012162201001098.
The aim of this study was to examine measures of health-related quality of life (HRQL) in children with cerebral palsy (CP) by comparing scores of a generic HRQL measure, the Child Health Questionnaire (CHQ); a disease-specific HRQL measure for children with CP, the Caregiver Questionnaire (CQ); and a pediatric functional measure, the Wee-Functional Independence Measure (WeeFIM). Participants included 30 caregivers of children with CP. The caregivers' children were a mean age of 8 years 6 months (17 females, 13 males). The ethnic origin of the children was 18 African-American, 8 white, 3 Hispanic, and 1 Middle Eastern. Significant correlations were found between the CQ and WeeFIM total and subscale scores (r=0.388 to 0.641). There was no correlation between the CHQ and CQ total summary scores, but significant correlations were found between the CHQ subscales related to parent time and family cohesion and the CQ total and subscale scores (r=0.386 to 0.481). The lack of correlation between the CHQ and WeeFIM indicates HRQL and function are different constructs that cannot be inferred from each other. The fair relationship found between the CQ and WeeFIM suggests that the constructs measured in these two assessments overlap. The lack of correlation between the total summary scores of the CHQ and CQ suggests the CQ may be a more specific measure of HRQL for this population that reflects the impact of the child's condition on the caregiver.
本研究的目的是通过比较一种通用的健康相关生活质量（HRQL）测量工具——儿童健康问卷（CHQ）的得分；一种针对脑瘫（CP）儿童的疾病特异性HRQL测量工具——照顾者问卷（CQ）；以及一种儿科功能测量工具——小儿功能独立性测量（WeeFIM），来检验脑瘫儿童的HRQL测量指标。研究参与者包括30名脑瘫儿童的照顾者。这些照顾者的孩子平均年龄为8岁6个月（17名女性，13名男性）。这些儿童的种族背景为18名非裔美国人、8名白人、3名西班牙裔和1名中东人。发现CQ与WeeFIM的总分及各子量表得分之间存在显著相关性（r = 0.388至0.641）。CHQ与CQ的总汇总得分之间没有相关性，但在与家长时间和家庭凝聚力相关的CHQ子量表与CQ的总分及子量表得分之间发现了显著相关性（r = 0.386至0.481）。CHQ与WeeFIM之间缺乏相关性表明HRQL和功能是不同的概念，不能相互推断。CQ与WeeFIM之间发现的适度关系表明这两项评估中所测量的概念存在重叠。CHQ与CQ的总汇总得分之间缺乏相关性表明CQ可能是针对该人群的更具体的HRQL测量工具，它反映了儿童病情对照顾者的影响。
