Kossoff Eric H, Sutter Lindsay, Doerrer Sarah C, Haney Courtney A, Turner Zahava
1 Departments of Neurology and Pediatrics, Johns Hopkins Hospital, Baltimore, MD, USA.
2 Division of Child Life, Department of Pediatrics, Johns Hopkins Hospital, Baltimore, MD, USA.
J Child Neurol. 2017 Aug;32(9):828-833. doi: 10.1177/0883073817709179. Epub 2017 May 8.
Traditionally the ketogenic diet is started as an inpatient admission to the hospital. Starting in January 2015, child life services were made formally available during ketogenic diet admissions to help families cope. One-page surveys were then provided to 15 parents on the day of discharge and again after 3 months. Every family believed that the child life services were helpful. Children who were developmentally appropriate/mildly delayed had higher parent-reported anxiety scores than those who were moderate to severely delayed (4.4 vs 1.0, P = .02). At 3 months, child life services were deemed very helpful for the parents (mean score: 8.9, range: 5-10), and were more helpful for the parent than the child (mean 6.2, range 1-10, P = .047). One of the most helpful services was a prior phone call to parents 1 week prior. In this small pilot study, child life involvement during the start of the ketogenic diet was highly useful.
传统上，生酮饮食是在住院期间开始的。从2015年1月起，在生酮饮食住院期间正式提供儿童生活服务，以帮助家庭应对。出院当天向15位家长提供了单页调查问卷，并在3个月后再次提供。每个家庭都认为儿童生活服务很有帮助。发育正常/轻度发育迟缓的儿童，家长报告的焦虑得分高于中度至重度发育迟缓的儿童（4.4对1.0，P = 0.02）。在3个月时，儿童生活服务被认为对家长非常有帮助（平均得分：8.9，范围：5 - 10），并且对家长比对孩子更有帮助（平均6.2，范围1 - 10，P = 0.047）。最有帮助的服务之一是提前1周给家长打电话。在这项小型试点研究中，生酮饮食开始阶段儿童生活服务的参与非常有用。
