Sajobi Tolulope T, Wang Meng, Ferro Mark A, Brobbey Anita, Goodwin Shane, Speechley Kathy N, Wiebe Samuel
Department of Community Health Sciences & O'Brien Institute for Public Health, University of Calgary, Calgary, Alberta, Canada; Department of Clinical Neurosciences & Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta, Canada.
Department of Clinical Neurosciences & Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta, Canada.
Epilepsy Behav. 2017 Oct;75:72-78. doi: 10.1016/j.yebeh.2017.07.037. Epub 2017 Aug 19.
The diagnosis of epilepsy in children is known to impact the trajectory of their health-related quality of life (HRQOL) over time. However, there is limited knowledge about variations in longitudinal trajectories across multiple domains of HRQOL. This study aims to characterize the heterogeneity in HRQOL trajectories across multiple HRQOL domains and to evaluate predictors of differences among the identified trajectory groups in children with new-onset epilepsy. Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study (HERQULES), a prospective multi-center study of 373 children newly diagnosed with new-onset epilepsy who were followed up over 2years. Child HRQOL and family factors were reported by parents, and clinical characteristics were reported by neurologists. Group-based multi-trajectory modeling was adopted to characterize longitudinal trajectories of HRQOL as measured by the individual domains of cognitive, emotional, physical, and social functioning in the 55-item Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55). Multinomial logistic regression was used to assess potential factors that explain differences among the identified latent trajectory groups. Three distinct HRQOL trajectory subgroups were identified in children with new-onset epilepsy based on HRQOL scores: "High" (44.7%), "Intermediate" (37.0%), and "Low" (18.3%). While most trajectory groups exhibited increasing scores over time on physical and social domains, both flat and declining trajectories were noted on emotional and cognitive domains. Less severe epilepsy, an absence of cognitive and behavioral problems, lower parental depression scores, better family functioning, and fewer family demands were associated with a "Higher" or "Intermediate" HRQOL trajectory. The course of HRQOL over time in children with new-onset epilepsy appears to follow one of three different trajectories. Addressing the clinical and psychosocial determinants identified for each pattern can help clinicians provide more targeted care to these children and their families.
众所周知，儿童癫痫的诊断会随着时间影响他们与健康相关的生活质量（HRQOL）轨迹。然而，对于HRQOL多个领域纵向轨迹的变化了解有限。本研究旨在描述HRQOL多个领域轨迹的异质性，并评估新发性癫痫患儿中已识别轨迹组间差异的预测因素。数据来自癫痫患儿健康相关生活质量研究（HERQULES），这是一项对373名新诊断为新发性癫痫的儿童进行的前瞻性多中心研究，随访时间超过2年。父母报告儿童HRQOL和家庭因素，神经科医生报告临床特征。采用基于组的多轨迹建模来描述HRQOL的纵向轨迹，该轨迹通过55项儿童癫痫生活质量问卷（QOLCE - 55）的认知、情感、身体和社会功能各个领域进行测量。多项逻辑回归用于评估解释已识别潜在轨迹组间差异的潜在因素。根据HRQOL评分，在新发性癫痫患儿中识别出三个不同的HRQOL轨迹亚组：“高”（44.7%）、“中”（37.0%）和“低”（18.3%）。虽然大多数轨迹组在身体和社会领域的得分随时间增加，但在情感和认知领域注意到了平稳和下降的轨迹。癫痫不太严重、没有认知和行为问题、父母抑郁得分较低、家庭功能较好以及家庭需求较少与“较高”或“中等”的HRQOL轨迹相关。新发性癫痫患儿的HRQOL随时间的变化过程似乎遵循三种不同轨迹之一。针对每种模式确定的临床和心理社会决定因素进行处理，可帮助临床医生为这些儿童及其家庭提供更有针对性的护理。
