中国实用儿科杂志

中国实用儿科杂志 ›› 2024, Vol. 39 ›› Issue (7): 524-529.DOI: 10.19538/j.ek2024070610

• 论著 • 上一篇    下一篇

生酮饮食治疗患儿基线营养状况和主要照顾者对其知晓现况调查研究

  

  1. 国家儿童医学中心（上海）  复旦大学附属儿科医院a临床营养科b神经内科，上海  201102
  • 出版日期:2024-07-06 发布日期:2024-09-09
  • 通讯作者: 钱甜，电子信箱：13564788400@163.com
  • 基金资助:
    中国抗癫痫协会癫痫科研基金（CJ-A-2021-04）

Baseline nutritional status of children on ketogenic diet and the awareness of ketogenic dietary therapies in the primary caregivers

  1. *Department of Clinical Nutrition，National Children's Medical Center，Children’s Hospital of Fudan University，Shanghai  201102，China
  • Online:2024-07-06 Published:2024-09-09

摘要： 目的    调查生酮饮食治疗启动前期患儿基线营养状况和主要照顾者对生酮饮食疗法（ketogenic diet therapies，KDTs）的知晓现况，为后续有效治疗和长程管理模式的探索提供依据。方法    采用前瞻性队列研究设计，纳入2021年7月至2024年1月于复旦大学附属儿科医院神经内科接受KDTs患儿及其主要照顾者作为研究对象，患儿完善营养筛查与评估。采用现场调查方式对主要照顾者进行问卷调查，了解患儿日常饮食行为习惯和主要照顾者在启动前期对KDTs知晓情况。结果    研究共纳入104例患儿，有效问卷回收率100%。所有患儿均存在营养风险。在针对患儿日常饮食行为习惯的调查中发现，55.3%的患儿存在挑食偏食问题。在启动生酮饮食治疗前期，89.4%的主要照顾者通过神经内科专科就诊知晓患儿可行生酮饮食治疗，25.0%通过微信、网络、书籍知晓，10.6%通过病友群知晓。对于KDTs执行问题，72.1%的主要照顾者担心患儿难以接受此类特殊饮食，28.8%担心无法胜任临床实施流程，22.1%担心自身无法准确掌握生酮饮食治疗团队的教学。对于疗效期待，主要照顾者均期望患儿癫痫发作得到有效控制，79.8%期望治疗的同时能够改善患儿认知行为能力，77.9%期望同时能够减停所有抗癫痫药物。结论    启动KDTs的患儿存在中度或高度营养风险，部分患儿存在营养不足或过剩问题。患儿日常存在膳食摄入不均衡的比例较高。主要照顾者对于疗效期待值较高。KDTs团队在常规诊疗过程中需关注患儿营养状况，加大KDTs宣教力度，以保障其能够安全有效实施。

关键词: 生酮饮食, 营养状况, 主要照顾者, 现况调查

Abstract: Objective    To investigate the baseline nutritional status of children prior to commencing of ketogenic diet therapies（KDTs）and the level of awareness regarding KDTs among primary caregivers，providing a foundation for subsequent effective treatment and exploration of long-term management strategies. Methods    A prospective cohort study design was adopted.The study included children who underwent KDTs at the Department of Neurology，Children's Hospital of Fudan University from July 2021 to January 2024 and their primary caregivers. The children underwent nutritional screening and assessment.A questionnaire survey was administered to the primary caregivers to assess the daily dietary behaviors of the children and their caregivers’ awareness of KDTs in the early stages. Results    A total of 104 children were enrolled in this study，achieving a questionnaire recovery rate of 100%.All children exhibited nutritional risks. Regarding daily dietary behaviors，picky eating and partial eating problems were observed in 55.3% of the children.During initial stages of KDTs，specialist visits at the Department of Neurology accounted for knowledge acquisition by 89.4% of primary caregivers；WeChat/internet/books or patient groups contributed 25.0% and 10.6%，respectively. Regarding the implementation of KDTs，a significant majority（72.1%）of primary caregivers expressed concerns regarding their children's potential challenges in accepting such a specialized dietary regimen.Moreover，28.8% expressed concerns regarding their lack of ability in managing the clinical implementation process，while 22.1% had concerns about accurately comprehending the teachings provided by the KDTs team. In terms of expected therapeutic outcomes，all primary caregivers anticipated effective seizure control for their children，with an additional 79.8% hoping for improvements in cognitive behavior and 77.9% expecting a reduction or cessation of all antiepileptic medications simultaneously. Conclusion    Children initiating KDTs are at a moderate to high nutritional risk，with some experiencing issues related to undernutrition or overnutrition.The proportion of unbalanced dietary intake is high. The primary caregivers have  a high expectation for curative effect. The KDTs team should pay attention to the nutritional status of children throughout the routine diagnostic and therapeutic process，while intensifying the dissemination and education on ketogenic diet therapy to ensure its safe and efficacious implementation.

Key words: ketogenic diet, nutritional status, primary caregiver, survey of current situation