Arnaud Catherine, White-Koning Melanie, Michelsen Susan Ishoy, Parkes Jackie, Parkinson Kathryn, Thyen Ute, Beckung Eva, Dickinson Heather O, Fauconnier Jerome, Marcelli Marco, McManus Vicki, Colver Allan
National Institute of Health and Medical Research, U558, Research Unit on Perinatal Epidemiology, Child Health and Development, Toulouse University III Paul Sabatier, Toulouse, France.
Pediatrics. 2008 Jan;121(1):54-64. doi: 10.1542/peds.2007-0854.
The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy.
Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains.
The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life.
The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.
确定儿童损伤的类型和严重程度以及家庭的心理社会、社会和经济特征是否会影响家长报告的不同严重程度脑瘫患儿的生活质量。
我们在2004年至2005年进行的基于人群的横断面调查涉及来自欧洲7个国家（9个地区）的818名8至12岁的脑瘫患儿。通过家长报告，使用儿童生活质量量表（Kidscreen问卷）评估儿童生活质量，并对其10个领域分别进行数据分析。
除一个领域外，所有领域的家长回复率均超过93%。在大多数领域，发现粗大运动功能和智商水平与生活质量独立相关。然而，损伤的严重程度增加并不总是与较差的生活质量相关；在情绪和情感、自我认知、社会接纳和学校环境领域，损伤较轻的儿童更有可能生活质量较差。疼痛与身体和心理健康以及自我认知领域的生活质量较差相关。压力水平较高的家长在所有领域更有可能报告生活质量较差，这表明除了儿童损伤的严重程度之外，其他因素可能会影响家长报告生活质量的方式。
家长报告的脑瘫患儿生活质量与损伤密切相关。然而，根据生活领域的不同，损伤最严重的儿童（在运动功能或智力方面）并不总是生活质量最差。
