Rapp Marion, Eisemann Nora, Arnaud Catherine, Ehlinger Virginie, Fauconnier Jérôme, Marcelli Marco, Michelsen Susan I, Nystrand Malin, Colver Allan, Thyen Ute
Department of Pediatrics, University of Luebeck, Ratzeburger Allee 160, 23538 Luebeck, Germany.
Institute of Cancer Epidemiology, University of Luebeck, Ratzeburger Allee 160, 23538 Luebeck, Germany.
Res Dev Disabil. 2017 Mar;62:259-270. doi: 10.1016/j.ridd.2016.12.005. Epub 2017 Jan 19.
Parent-reporting is needed to examine Quality of Life (QoL) of children with cerebral palsy (CP) across all severities. This study examines whether QoL changes between childhood and adolescence, and what predicts adolescent QoL.
SPARCLE is a European cohort study of children with CP, randomly sampled from population databases. Of 818 8-12-year-olds joining the study, 594 (73%) were revisited as 13-17-year-olds. The subject of this report is the 551 (316 boys, 235 girls) where the same parent reported QoL on both occasions using KIDSCREEN-52 (transformed Rasch scale, mean 50, SD 10 per domain). Associations were assessed using linear regression.
Between childhood and adolescence, average QoL reduced in six domains (1.3-3.8 points, p<0.01) and was stable in three (Physical wellbeing, Autonomy, Social acceptance). Socio-demographic factors had little predictive value. Childhood QoL was a strong predictor of all domains of adolescent QoL. Severe impairments of motor function, IQ or communication predicted higher adolescent QoL on some domains; except that severe motor impairment predicted lower adolescent QoL on the Autonomy domain. More psychological problems and higher parenting stress in childhood and their worsening by adolescence predicted lower QoL in five and eight domains respectively; contemporaneous pain in seven domains. The final model explained 30%-40% of variance in QoL, depending on domain.
In general, impairment severity and socio-demographic factors were not predictors of lower adolescent QoL. However, pain, psychological problems and parenting stress were predictors of lower adolescent QoL in most domains. These are modifiable factors and addressing them may improve adolescent QoL.
需要通过家长报告来评估不同严重程度的脑瘫（CP）儿童的生活质量（QoL）。本研究旨在探讨儿童期至青少年期生活质量是否发生变化，以及哪些因素可预测青少年的生活质量。
SPARCLE是一项针对CP儿童的欧洲队列研究，从人口数据库中随机抽样。在818名8至12岁参与研究的儿童中，594名（73%）在13至17岁时接受了回访。本报告的研究对象为551名儿童（316名男孩，235名女孩），两次均由同一位家长使用儿童生活质量量表（KIDSCREEN - 52，转换后的拉施量表，每个领域平均分50，标准差10）报告生活质量。使用线性回归评估相关性。
从儿童期到青少年期，六个领域的平均生活质量有所下降（1.3 - 3.8分，p<0.01），三个领域保持稳定（身体健康、自主性、社会接纳）。社会人口学因素的预测价值不大。儿童期的生活质量是青少年期生活质量所有领域的有力预测指标。运动功能、智商或沟通方面的严重损伤在某些领域预测青少年生活质量较高；但严重运动损伤在自主性领域预测青少年生活质量较低。儿童期更多的心理问题和更高的育儿压力以及到青少年期情况恶化分别在五个和八个领域预测生活质量较低；同时疼痛在七个领域有此影响。最终模型解释了生活质量30% - 40%的方差，具体取决于领域。
总体而言，损伤严重程度和社会人口学因素并非青少年生活质量较低的预测指标。然而，疼痛、心理问题和育儿压力是大多数领域青少年生活质量较低的预测指标。这些都是可改变的因素，解决这些问题可能会改善青少年的生活质量。
