Ramsey Rachelle R, Loiselle Kristin, Rausch Joseph R, Harrison Jordan, Modi Avani C
Center for Treatment Adherence and Self-Management, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave., MLC 7039, Cincinnati, OH 45229, USA.
Thomas E. Cook Counseling Center, Virginia Tech, 895 Washington St. SW, Blacksburg, VA 24061, USA.
Epilepsy Behav. 2016 Apr;57(Pt A):202-210. doi: 10.1016/j.yebeh.2016.02.002. Epub 2016 Mar 12.
The objective of this study was to identify two-year trajectories of epilepsy-specific health-related quality of life (HRQOL) among children newly diagnosed with epilepsy and to evaluate the predictive value of a comprehensive set of medical, psychosocial, and family factors.
Ninety-four children with epilepsy (8.14 ± 2.37 years of age and 63% male) and their caregivers participated in this study. Caregivers completed the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE) and measures of psychological and family functioning at one month postdiagnosis. The QOLCE was also given at eight additional time points during the subsequent two years as a part of a large observational study in children with epilepsy. Adherence data were collected via MEMS TrackCaps, and medical information was collected through chart review.
Unique trajectories were identified for the overall QOLCE scale, as well as the subscales. Most trajectory models for the QOLCE subscales contained at least one at-risk trajectory for children, indicating that there is a subgroup of children experiencing poor long-term HRQOL. Health-related quality-of-life trajectories remained predominantly stable during the two-year period following treatment initiation. The number of AEDs, internalizing problems, and externalizing problems emerged as the most consistent predictors across the HRQOL domains.
Medical and psychosocial interventions, such as cognitive-behavioral strategies, should target modifiable factors (e.g., internalizing symptoms, externalizing symptoms, number of AEDs trialed) shortly after diagnosis to improve HRQOL for children with epilepsy over the course of their disease.
本研究的目的是确定新诊断为癫痫的儿童癫痫特异性健康相关生活质量（HRQOL）的两年轨迹，并评估一系列综合的医学、心理社会和家庭因素的预测价值。
94名癫痫儿童（8.14±2.37岁，63%为男性）及其照顾者参与了本研究。照顾者在诊断后1个月完成了儿童癫痫生活质量问卷（QOLCE）以及心理和家庭功能测量。作为一项针对癫痫儿童的大型观察性研究的一部分，在随后的两年中还在另外8个时间点进行了QOLCE评估。通过MEMS TrackCaps收集依从性数据，并通过病历审查收集医学信息。
确定了QOLCE总量表以及各子量表的独特轨迹。QOLCE子量表的大多数轨迹模型至少包含一条儿童的风险轨迹，表明有一小部分儿童长期HRQOL较差。在开始治疗后的两年期间，健康相关生活质量轨迹基本保持稳定。抗癫痫药物数量、内化问题和外化问题是HRQOL各领域最一致的预测因素。
医学和心理社会干预措施，如认知行为策略，应在诊断后不久针对可改变的因素（如内化症状、外化症状、试用的抗癫痫药物数量），以改善癫痫儿童在病程中的HRQOL。
