Faculty of Medicine, University of Ottawa, Ottawa, ON, Canada.
Clinical Research Unit, Children's Hospital of Eastern Ontario, Ottawa, ON, Canada.
Epilepsy Behav. 2020 Mar;104(Pt A):106664. doi: 10.1016/j.yebeh.2019.106664. Epub 2020 Jan 17.
Up to 30% of children with epilepsy show a poor therapeutic response to pharmacologic treatment. Ketogenic diets, including the less strict low glycemic index treatment (LGIT), may improve seizure control in pharmacoresistant epilepsy. However, little is known about the quality of life (QoL) in children on LGIT. To explore psychosocial implications of the LGIT on pediatric patients and their caregivers, we have conducted a pilot study to explore the QoL of children and adolescents on the diet.
Pediatric patients on LGIT and their parents completed standardized, validated QoL questionnaires (Pediatric Quality of Life Epilepsy Module), one retrospectively and one while being on LGIT. An additional questionnaire included two open-ended questions in order to gain a better understanding of personal experiences of families.
We enrolled six patients with epilepsy on LGIT between the age of 3 and 13 years. Self-reported QoL decreased in all adolescents, regardless of improvement in seizure control. Parent-reported QoL improved in three of six participants, remained stable in one, and decreased in two patients (both displayed no seizure improvement). Parents and adolescents reported positive experiences of trying new foods and being more health conscious, as well as negative themes such as social isolation and meal preparation difficulties.
The lack of improvement in patient-reported QoL points towards an overall negative impact of the LGIT on patient well-being, despite positive effects on seizure control. Our preliminary results indicate that the benefits of seizure control may subjectively be outweighed by adverse social effects of the LGIT. Families should be made aware of psychosocial risks of the diet. Whenever possible, children should be part of the therapeutic decision-making process. Larger prospective studies are required to fully assess the overall impact of the LGIT.
多达 30%的癫痫患儿对药物治疗反应不佳。生酮饮食，包括不太严格的低血糖指数治疗（LGIT），可能改善耐药性癫痫的癫痫控制。然而，对于 LGIT 对儿童的生活质量（QoL）知之甚少。为了探索 LGIT 对儿科患者及其照顾者的心理社会影响，我们进行了一项试点研究，以探讨饮食患儿的 QoL。
接受 LGIT 的儿科患者及其父母完成了标准化的、经过验证的 QoL 问卷（儿童生活质量癫痫模块），一份是回顾性的，一份是在接受 LGIT 时完成的。一份额外的问卷包括两个开放式问题，以便更好地了解家庭的个人经历。
我们招募了六名年龄在 3 至 13 岁之间的接受 LGIT 的癫痫患儿。所有青少年的自我报告 QoL 均下降，无论癫痫控制是否改善。六名参与者中有三名的父母报告 QoL 有所改善，一名保持稳定，两名（均无癫痫改善）下降。父母和青少年报告了尝试新食物和更加关注健康的积极体验，以及社交孤立和用餐准备困难等负面主题。
尽管对癫痫控制有积极影响，但患者报告的 QoL 没有改善，这表明 LGIT 对患者的幸福感整体产生负面影响。我们的初步结果表明，尽管癫痫控制的好处可能会被 LGIT 的不利社会影响所抵消，但患者的主观感受可能会受到影响。应该让家庭意识到饮食的心理社会风险。只要有可能，儿童就应该参与治疗决策过程。需要更大规模的前瞻性研究来全面评估 LGIT 的整体影响。
