生活质量报告中儿童与家长意见一致的决定因素：一项针对欧洲脑瘫儿童的研究。
Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy.
作者信息
White-Koning Melanie, Arnaud Catherine, Dickinson Heather O, Thyen Ute, Beckung Eva, Fauconnier Jerome, McManus Vicki, Michelsen Susan I, Parkes Jackie, Parkinson Kathryn, Schirripa Giorgio, Colver Allan
机构信息
Institut National de la Santé et de la Recherche Médicale, U558, Faculté de Médecine, 37 Allées Jules Guesde, 31073 Toulouse Cedex, France.
出版信息
Pediatrics. 2007 Oct;120(4):e804-14. doi: 10.1542/peds.2006-3272.
OBJECTIVES
The differences between child self-reports and parent proxy reports of quality of life in a large population of children with cerebral palsy were studied. We examined whether child characteristics, severity of impairment, socioeconomic factors, and parental stress were associated with parent proxy reports being respectively higher or lower than child self-reports of quality of life.
METHODS
This study was conducted in 2004-2005 and assessed child quality of life (using the Kidscreen questionnaire, 10 domains, each scored 0-100) through self-reports and parent proxy reports of 500 children aged 8 to 12 years who had cerebral palsy and were living in 7 countries in Europe.
RESULTS
The mean child-reported scores of quality of life were significantly higher than the parent proxy reports in 8 domains, significantly lower for the finances domain, and similar for the emotions domain. The average frequency of disagreement (child-parent difference greater than half an SD of child scores) over all domains was 64%, with parents rating their child's quality of life lower than the children themselves in 29% to 57% of child-parent pairs. We found that high levels of stress in parenting negatively influenced parents' perception of their child's quality of life, whereas the main factor explaining parents' ratings of children's quality of life higher than the children themselves is self-reported severe child pain.
CONCLUSIONS
This study shows that the factors associated with disagreement are different according to the direction of disagreement. In particular, parental well-being and child pain should be taken into account in the interpretation of parent proxy reports, especially when no child self-report of quality of life is available. In the latter cases, it may be advisable to obtain additional proxy reports (from caregivers, teachers, or clinicians) to obtain complementary information on the child's quality of life.
目的
研究大量脑瘫儿童中儿童自我报告与家长代理报告的生活质量差异。我们考察了儿童特征、损伤严重程度、社会经济因素和父母压力是否分别与家长代理报告高于或低于儿童自我报告的生活质量相关。
方法
本研究于2004 - 2005年进行，通过对欧洲7个国家500名8至12岁脑瘫儿童的自我报告和家长代理报告，评估儿童生活质量（使用儿童生活质量量表问卷，10个领域，每个领域评分0 - 100）。
结果
在8个领域中，儿童报告的生活质量平均得分显著高于家长代理报告，在财务领域显著较低，在情感领域相似。所有领域的平均分歧频率（儿童与家长的差异大于儿童得分标准差的一半）为64%，在29%至57%的儿童 - 家长对中，家长对孩子生活质量的评分低于孩子自己的评分。我们发现育儿压力水平高会对父母对孩子生活质量的认知产生负面影响，而解释家长对孩子生活质量评分高于孩子自己评分的主要因素是孩子自我报告的严重疼痛。
结论
本研究表明，根据分歧方向，与分歧相关的因素有所不同。特别是，在解释家长代理报告时应考虑父母的幸福感和孩子的疼痛，尤其是在没有儿童生活质量自我报告的情况下。在后一种情况下，获取额外的代理报告（来自照顾者、教师或临床医生）以获得关于孩子生活质量的补充信息可能是可取的。
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