School of Public Health and Health Systems, University of Waterloo, Waterloo, Ontario, Canada.
Avery Information Services, Orillia, Ontario, Canada.
Epilepsia. 2017 Jul;58(7):1277-1286. doi: 10.1111/epi.13774. Epub 2017 May 9.
To describe the developmental trajectories of quality of life (QoL) in a large cohort of children with epilepsy, and to assess the relative contribution of clinical, psychosocial, and sociodemographic variables on QoL trajectories.
Five assessments during a 28-month prospective cohort study were used to model trajectories of QoL. Participants were recruited with their parents from six Canadian tertiary centers. A convenience sample of 506 children aged 8-14 years with epilepsy and without intellectual disability or autism spectrum disorder were enrolled. A total of 894 children were eligible and 330 refused participation. Participating children were, on average, 11.4 years of age, and 49% were female. Nearly one third (32%) had partial seizures. At baseline, 479 and 503 child- and parent-reported questionnaires were completed. In total, 354 children (74%) and 366 parents (73%) completed the 28-month follow-up. QoL was measured using the child- and parent-reported version of the Childhood Epilepsy QoL scale (CHEQOL-25).
Child-reported QoL was fitted best by a six-class model and parent-reported QoL by a five-class model. In both models, trajectories remained either stable or improved over 28 months. Of these children, 62% rated their QoL as high or moderately high, defined as at least one standard deviation above the average CHEQOL-25 score. Greater family, classmate, and peer social support, fewer symptoms of child and parent depression, and higher receptive vocabulary were identified as the most robust predictors of better QoL (all p < 0.001).
Most children with epilepsy and their parents reported relatively good QoL in this first joint self- and proxy-reported trajectory study. Findings confirm the heterogeneous QoL outcomes for children with epilepsy and the primary importance of psychosocial factors rather than seizure and AED-specific factors in influencing QoL. These predictors that are potentially amenable to change should now be the focus of specific intervention studies.
描述大量癫痫患儿生活质量（QoL）的发展轨迹，并评估临床、心理社会和社会人口学变量对 QoL 轨迹的相对贡献。
使用 28 个月的前瞻性队列研究中的 5 次评估来建立 QoL 轨迹模型。研究招募了来自加拿大 6 个三级中心的患儿及其父母。共纳入了 506 名年龄在 8-14 岁、无智力障碍或自闭症谱系障碍的癫痫患儿，共 894 名患儿符合条件，330 名患儿拒绝参与。入组患儿平均年龄为 11.4 岁，49%为女性。近三分之一（32%）患儿为部分性发作。基线时，完成了 479 份儿童和 503 份家长报告的问卷。共有 354 名儿童（74%）和 366 名家长（73%）完成了 28 个月的随访。使用儿童和家长报告的儿童癫痫生活质量量表（CHEQOL-25）测量 QoL。
儿童报告的 QoL 最佳拟合模型为六类模型，而家长报告的 QoL 最佳拟合模型为五类模型。在这两个模型中，轨迹在 28 个月内保持稳定或改善。在这些儿童中，62%的人将自己的 QoL 评为高或中度高，定义为至少比 CHEQOL-25 平均得分高出一个标准差。家庭、同学和同伴社会支持较多、儿童和家长抑郁症状较少以及接受性词汇量较高，被确定为更好的 QoL 的最有力预测因素（均 p<0.001）。
在这项首次联合自我报告和代理报告的轨迹研究中，大多数癫痫患儿及其家长报告了相对较好的 QoL。研究结果证实了癫痫患儿 QoL 结果的异质性，以及心理社会因素而非发作和 AED 特异性因素在影响 QoL 中的主要作用。这些具有潜在可改变性的预测因素现在应该成为特定干预研究的重点。
