Rosenbaum Peter L, Livingston Michael H, Palisano Robert J, Galuppi Barbara E, Russell Dianne J
CanChild Centre for Childhood Disability Research, McMaster University, 1400 Main Street West, Hamilton, Ontario, Canada.
Dev Med Child Neurol. 2007 Jul;49(7):516-21. doi: 10.1111/j.1469-8749.2007.00516.x.
This study assessed quality of life (QOL) and health-related quality of life (HRQOL) of 203 adolescents with cerebral palsy (111 males, 92 females; mean age 16y [SD 1y 9mo]). Participants were classified using the Gross Motor Function Classification System (GMFCS), as Level I (n=60), Level II (n=33), Level III (n=28), Level IV (n=50), or Level V (n=32). QOL was assessed by self (66.5%) or by proxy (33.5%) with the Quality of Life Instrument for People With Developmental Disabilities, which asks about the importance and satisfaction associated with the QOL domains of Being, Belonging, and Becoming; HRQOL was captured through proxy reports with the Health Utilities Index, Mark 3 (HUI3), which characterizes health in terms of eight attributes, each having five or six ordered levels of function. GMFCS level was not a source of variation for QOL domain scores but was significantly associated with the eight HRQOL attributes and overall HUI3 utility scores (p<0.05). Some QOL domain scores varied significantly by type of respondent (self vs proxy; p<0.05). Overall HUI3 utility values were significantly but weakly correlated with QOL Instrument scores for Being (r=0.37), Belonging (r=0.17), Becoming (r=0.20), and Overall QOL (r=0.28), and thus explain up to 14% of the variance (r(2)). These findings suggest that although QOL and HRQOL are somewhat related conceptually, they are different constructs and need to be considered as separate dimensions of the lives of people with functional limitations.
本研究评估了203名脑瘫青少年（111名男性，92名女性；平均年龄16岁[标准差1岁9个月]）的生活质量（QOL）和健康相关生活质量（HRQOL）。参与者根据粗大运动功能分类系统（GMFCS）分为I级（n = 60）、II级（n = 33）、III级（n = 28）、IV级（n = 50）或V级（n = 32）。使用发育障碍者生活质量量表由患者自评（66.5%）或他人代评（33.5%）来评估生活质量，该量表询问了与“生存”“归属”和“成长”等生活质量领域相关的重要性和满意度；通过他人代评的健康效用指数Mark 3（HUI3）来获取健康相关生活质量，该指数根据八个属性来描述健康状况，每个属性有五到六个有序的功能水平。GMFCS分级不是生活质量领域得分的变异来源，但与八个健康相关生活质量属性及总体HUI3效用得分显著相关（p<0.05）。一些生活质量领域得分因回答者类型（自评与他人代评）不同而有显著差异（p<0.05）。总体HUI3效用值与生活质量量表中“生存”（r = 0.37）、“归属”（r = 0.17）、“成长”（r = 0.20）及总体生活质量（r = 0.28）的得分显著但弱相关，因此最多解释14%的方差（r²）。这些发现表明，虽然生活质量和健康相关生活质量在概念上有一定关联，但它们是不同的概念，需要被视为功能受限人群生活的不同维度。
