青少年癫痫患者过渡期准备护理实践专家共识

doi:10.3761/j.issn.0254-1769.2026.17.007

中华护理杂志 ›› 2026, Vol. 61 ›› Issue (17): 2351-2357.DOI: 10.3761/j.issn.0254-1769.2026.17.007

青少年癫痫患者过渡期准备护理实践专家共识

国家儿童医学中心儿科护理联盟小儿神经内科学组 (执笔：宁佩¹(), 崔璀¹^,^*(), 李双子², 张楠³, 夏思洁⁴, 项雅玲⁴, 谢园)⁴

¹ 深圳市儿童医院护理部深圳市 518038
² 重庆医科大学附属儿童医院护理部/儿童少年健康与疾病国家临床医学研究中心/儿童发育疾病研究教育部重点实验室/儿童神经发育与认知障碍重庆市重点实验室重庆市 400000
³ 重庆医科大学附属儿童医院神经内科/儿童少年健康与疾病国家临床医学研究中心/儿童发育疾病研究教育部重点实验室/儿童神经发育与认知障碍重庆市重点实验室重庆市 400000
⁴ 重庆医科大学护理学院重庆市 400016

收稿日期:2025-12-10 出版日期:2026-09-10 发布日期:2026-09-03
*通讯作者: 崔璀，E-mail：cuicui17@126.com
作者简介:宁佩：女，硕士，主管护师，护理部干事，E-mail：peining_12@163.com
基金资助:
重庆市教委科学技术研究项目(KJZD-M202400404)

Expert consensus on nursing practice of transition readiness for adolescents with epilepsy

Pediatric Neurology Group of the Pediatric Nursing Alliance，National Center for Children’s Health (Writing Committee：NING Pei¹(), CUI Cui¹^,^*(), LI Shuangzi², ZHANG Nan³, XIA Sijie⁴, XIANG Yaling⁴, XIE Yuan)⁴

¹ Department of Nursing， Shenzhen Children’s Hospital， Shenzhen 518038， China
² Department of Nursing， Children’s Hospital of Chongqing Medical University，National Clinical Research Center for Children and Adolescents’ Health and Diseases，Ministry of Education Key Laboratory of Child Development and Disorders， Chongqing 400000， China
³ Department of Neurology， Children’s Hospital of Chongqing Medical University，National Clinical Research Center for Children and Adolescents’ Health and Diseases，Ministry of Education Key Laboratory of Child Development and Disorders， Chongqing 400000， China
⁴ School of Nursing， Chongqing Medical University， Chongqing 400016， China

Received:2025-12-10 Online:2026-09-10 Published:2026-09-03
* Corresponding author: CUI Cui，E-mail：cuicui17@126.com
Funding program:
The Science and Technology Research Program of Chongqing Municipal Education Commission(KJZD-M202400404)

1. “青少年癫痫患者过渡期准备护理实践专家共识”全文.pdf(1219KB)

摘要/Abstract

摘要：

目的制订青少年癫痫患者过渡期准备护理实践专家共识（以下简称“共识”），推动医护人员实施规范的青少年癫痫患者过渡期准备护理。方法系统检索国内外青少年癫痫患者过渡期准备相关的指南、专家共识、系统评价等，并经过多次小组讨论，编写“共识”初稿；2025年9—11月，通过1轮专家函询和1轮线上专家会议，对内容进行修改与完善，形成“共识”终稿。结果共21名专家完成函询，专家积极系数为100%，专家权威系数为0.874，各推荐意见的适宜性评分均>7分，变异系数均<0.250，肯德尔和谐系数为0.351（P<0.05）。最终形成的“共识”包括明确过渡期重点关注人群、过渡期准备定义、组建多学科团队、过渡期准备启动及结束时机、过渡期准备的目标、过渡期准备的评估、癫痫疾病知识与自我认知、药物管理、紧急处理与安全管理、心理健康与社会适应、转介服务中的护理支持、护理实践的效果评价12个方面，共30条推荐意见。结论该“共识”具有科学性和实用性，内容覆盖青少年癫痫患者过渡期准备护理的多个关键环节，可为青少年癫痫患者的延续性医疗服务提供参考。

关键词: 癫痫, 青少年, 过渡护理, 过渡期准备, 专家共识

Abstract:

Objective To develop an expert consensus on nursing practice for transition readiness in adolescents with epilepsy（hereinafter referred to as “the consensus”），in order to promote healthcare professionals in implementing standardized transitional care for adolescents with epilepsy. Methods Relevant domestic and international literature was systematically reviewed，including guidelines，expert consensuses，systematic reviews，and other sources related to transition readiness in adolescents with epilepsy. After multiple rounds of group discussions，a draft version of the consensus was developed. From September to November 2025，a round of expert correspondence and a round of online expert meetings were conducted to revise and improve the content，resulting in the final version of the consensus. Results A total of 21 experts completed the correspondence survey. The expert positive coefficient was 100%；the authority coefficient was 0.874；the suitability scores for all recommendations were greater than 7 points；the coefficients of variation were all less than 0.250；Kendall’s coefficient of concordance was 0.351（P<0.05）. The final “consensus” includes 12 aspects and 30 recommendations：identifying the key population requiring attention during the transition period，defining transition readiness，forming a multidisciplinary team，determining the start and end timing of transition readiness，setting goals for transition readiness，assessment of transition readiness，epilepsy knowledge and self-awareness，medication management，emergency management and safety management，mental health and social adaptation，nursing support in referral services，and evaluation of nursing practice effectiveness. Conclusion The “consensus” demonstrates scientific validity and practical applicability. Its content addresses the critical components of transitional care preparation for adolescents with epilepsy and provides a reference for the continuity of medical services for these patients.

Key words: Epilepsy, Adolescent, Transition Care, Transition Readiness, Expert Consensus

国家儿童医学中心儿科护理联盟小儿神经内科学组 (执笔：宁佩, 崔璀, 李双子, 张楠, 夏思洁, 项雅玲, 谢园). 青少年癫痫患者过渡期准备护理实践专家共识[J]. 中华护理杂志, 2026, 61(17): 2351-2357.

Pediatric Neurology Group of the Pediatric Nursing Alliance，National Center for Children’s Health (Writing Committee：NING Pei, CUI Cui, LI Shuangzi, ZHANG Nan, XIA Sijie, XIANG Yaling, XIE Yuan). Expert consensus on nursing practice of transition readiness for adolescents with epilepsy[J]. Chinese Journal of Nursing, 2026, 61(17): 2351-2357.

参考文献 37

[1]	江载芳, 申昆玲, 沈颖. 诸福棠实用儿科学[M]. 8版. 北京: 人民卫生出版社, 2015.
	Jiang ZF, Shen KL, Shen Y. Zhu futang practice of pediatrics[M]. 8th ed. Beijing: People’s Medical Publishing House, 2015.
[2]	中国抗癫痫协会. 临床诊疗指南-癫痫病分册[M]. 2版. 北京: 人民卫生出版社, 2015.
	China Association Against Epilepsy. Guidelines for clinical diagnosis and treatment-epilepsy fascicle[M]. 2nd ed. Beijing: People’s Medical Publishing House, 2015.
[3]	Nabbout R, Andrade DM, Bahi-Buisson N, et al. Outcome of chil-dhood-onset epilepsy from adolescence to adulthood:transition issues[J]. Epilepsy Behav, 2017, 69:161-169. DOI PMID
[4]	Blum RW, Garell D, Hodgman CH, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions a position paper of the Society for Adoles-cent Medicine[J]. J Adolesc Health, 1993, 14(7):570-576. DOI URL
[5]	Schwartz LA, Hamilton JL, Brumley LD, et al. Development and content validation of the transition readiness inventory item pool for adolescent and young adult survivors of childhood cancer[J]. J Pediatr Psychol, 2017, 42(9):983-994. DOI PMID
[6]	Zulfiqar Ali Q, Marques P, Patel P, et al. Transition in epilepsy:a pilot study with patients in and outside of academic centers[J]. Epilepsy Behav, 2024, 151:109624. DOI URL
[7]	Nagra A, McGinnity PM, Davis N, et al. Implementing transition:ready steady go[J]. Arch Dis Child Educ Pract Ed, 2015, 100(6):313-320. DOI URL
[8]	Jurasek L, Ray L, Quigley D. Development and implementation of an adolescent epilepsy transition clinic[J]. J Neurosci Nurs, 2010, 42(4):181-189. PMID
[9]	Scottish Intercollegiate Guidelines Network. Epilepsies in children and young people:investigative procedures and management[J/OL]. (2021-05-17)[2025-12-08]. https://www.sign.ac.uk/media/1844/sign-159-epilepsy-in-children-final.pdf.
[10]	Andrade DM, Bassett AS, Bercovici E, et al. Epilepsy:transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force[J]. Epilepsia, 2017, 58(9):1502-1517. DOI URL
[11]	王飒, 苗华丽, 李雨蔚, 等. 10-19岁慢性病患者向成人过渡期准备度评估工具的系统评价[J]. 中华护理杂志, 2025, 60(4):469-477. DOI
	Wang S, Miao HL, Li YW, et al. A systematic review of tools for assessing the readiness of patients with chronic diseases aged 10-19 to transition to adulthood[J]. Chin J Nurs, 2025, 60(4):469-477. DOI
[12]	Nabbout R, Molimard A, Scorrano G, et al. Transition from pediatric to adult care system in patients with complex epilepsies:necker model for transition evaluated on 70 consecutive patients[J]. Epilepsia, 2025, 66(1):134-147. DOI PMID
[13]	邢唯杰, 周英凤, 朱政, 等. 证据金字塔的发展:从“6S”模型到“5S”模型[J]. 护士进修杂志, 2025, 40(13):1345-1348.
	Xing WJ, Zhou YF, Zhu Z, et al. Evolution of the evidence pyramid:from the “6S” model to the “5S” model[J]. J Nurses Train, 2025, 40(13):1345-1348.
[14]	Oral A. How effective are self-management interventions for children with epilepsy:a Cochrane review summary with commentary[J]. Develop Med Child Neuro, 2020, 62(5):551-553. DOI URL
[15]	Michaelis R, Tang V, Nevitt SJ, et al. Cochrane systematic review and meta-analysis of the impact of psychological treatment on health-related quality of life in people with epilepsy:an update by the ILAE Psychology Task Force,highlighting methodological changes[J]. Epileptic Disord, 2021, 23(6):803-811. DOI PMID
[16]	Fleeman N, Bradley PM, Panebianco M, et al. Care delivery and self-management strategies for children with epilepsy[J]. Cochrane Database Syst Rev, 2022, 4(4):CD006245.
[17]	Abildgaard Hansen O, Clemensen J, Beier CP, et al. Living with epilepsy in adolescence and young adulthood transitioning from pediatric to adult hospital services:a systematic review and meta-synthesis of qualitative studies[J]. Epilepsy Behav, 2024, 158:109955. DOI URL
[18]	Fegran L, Hall EOC, Uhrenfeldt L, et al. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care:a qualitative meta-synthesis[J]. Int J Nurs Stud, 2014, 51(1):123-135. DOI PMID
[19]	Andrade DM, Berg AT, Hood V, et al. Dravet syndrome:a quick transition guide for the adult neurologist[J]. Epilepsy Res, 2021, 177:106743. DOI URL
[20]	Capovilla G, Mastrangelo M, Romeo A, et al. Recommendations for the management of “febrile seizures” Ad hoc Task Force of LICE Guidelines Commission[J]. Epilepsia, 2009, 50(S1):2-6.
[21]	Gonzalez-Viana E, Sen A, Bonnon A, et al. Epilepsies in children,young people,and adults:summary of updated NICE guidance[J]. BMJ,2022:o1446.
[22]	Brunklaus A, Schubert-Bast S, Darra F, et al. Communicating a diagnosis of Dravet syndrome to parents/caregivers:an international Delphi consensus[J]. Epilepsia Open, 2025, 10(2):450-465. DOI PMID
[23]	Camfield PR, Andrade D, Camfield CS, et al. How can transition to adult care be best orchestrated for adolescents with epilepsy?[J]. Epilepsy Behav, 2019, 93:138-147. DOI PMID
[24]	Darra F, Klaus PB, Audenino D, et al. Delphi consensus finding on paediatric-adult transition:results from the epilepsy transition working group of the Italian league against epilepsy(LICE)[J]. Neurol Sci, 2025, 46(9):4601-4613. DOI PMID
[25]	Penovich P, Glauser T, Becker D, et al. Recommendations for development of Acute Seizure Action Plans(ASAPs) from an expert panel[J]. Epilepsy Behav, 2021, 123:108264. DOI URL
[26]	Saxby N, Ford K, Beggs S, et al. Developmentally appropriate supported self-management for children and young people with chronic conditions:a consensus[J]. Patient Educ Couns, 2020, 103(3):571-581. DOI URL
[27]	Toledo M, Poza JJ, Becerra JL, et al. Delphi consensus on the transition from paediatric to adult epilepsy care[J]. Neurol Perspect, 2024, 4(2):100155. DOI URL
[28]	Villani F, Bisulli F, Darra F, et al. Improving the transition from pediatric to adult epilepsy care:an expert opinion[J]. Epilepsy Behav, 2025, 172:110552. DOI URL
[29]	中国抗癫痫协会护理专业委员会. 癫痫健康教育中国护理专家共识[J]. 癫痫杂志, 2024, 10(6):495-502.
	Nursing Professional Committee of the Chinese Anti-Epilepsy Association. Chinese nursing expert consensus on epilepsy health education[J]. J Epilepsy, 2024, 10(6):495-502.
[30]	Brouwers MC, Kho ME, Browman GP, et al. AGREE Ⅱ:advancing guideline development,reporting and evaluation in health care[J]. CMAJ, 2010, 182(18):839-842. DOI PMID
[31]	胡雁, 郝玉芳. 循证护理学[M]. 2版. 北京: 人民卫生出版社, 2018.
	Hu Y, Hao YF. Evidence-based nursing[M]. 2nd ed. Beijing: People’s Medical Publishing House, 2018.
[32]	王志稳, 韩舒羽. 护理领域专家共识论文的质量评价要点[J]. 中华护理杂志, 2024, 59(3):267-270. DOI
	Wang ZW, Han SY. The key points of quality criteria for expert consensus papers in nursing[J]. Chin J Nurs, 2024, 59(3):267-270. DOI
[33]	Guyatt GH, Oxman AD, Vist GE, et al. GRADE:an emerging consensus on rating quality of evidence and strength of recommendations[J]. BMJ, 2008, 336(7650):924-926. DOI URL
[34]	Kaga T, Inaba S, Shikano Y, et al. Utility of RAND/UCLA appropriateness method in validating multiple-choice questions on ECG[J]. BMC Med Educ, 2024, 24(1):448. DOI PMID
[35]	占楚仪, 顾莺, 王慧美. 青少年先天性心脏病患者向成人医疗过渡管理科学声明的解读[J]. 护理学杂志, 2024, 39(10):59-63.
	Zhan CY, Gu Y, Wang HM. Interpretation of the AHA Scientific Statement on transition management for adolescents with congenital heart disease to adult care[J]. J Nurs Sci, 2024, 39(10):59-63.
[36]	Michaelis R, Tang V, Goldstein LH, et al. Psychological treatments for adults and children with epilepsy:evidence-based recommendations by the International League Against Epilepsy Psychology Task Force[J]. Epilepsia, 2018, 59(7):1282-1302. DOI PMID
[37]	崔璀, 郑显兰, 陈文劲, 等. 癫痫青少年至成人过渡期准备评估问卷的汉化和信效度检验[J]. 中华护理杂志, 2023, 58(8):1017-1024. DOI
	Cui C, Zheng XL, Chen WJ, et al. Cross-cultural adaptation,reliability and validity of the Chinese version of the Transition Readiness Assessment Questionnaire for Adolescents with Epilepsy[J]. Chin J Nurs, 2023, 58(8):1017-1024.

青少年癫痫患者过渡期准备护理实践专家共识

Expert consensus on nursing practice of transition readiness for adolescents with epilepsy

RichHTML

PDF

补充材料

可视化

摘要/Abstract

引用本文

使用本文

参考文献 37

相关文章 15

编辑推荐

Metrics

[1]	夏云芳, 王洪, 崔岱, 付真真, 朱敏. 1例弥漫性毒性甲状腺肿合并超敏反应综合征青少年患者的护理[J]. 中华护理杂志, 2026, 61(9): 1253-1256.
[2]	陈慧菁, 李文琪, 谭玉娇, 李思琦, 常敏敏, 陈秀丽, 李桃, 刘卫娟. 1例重症幼年型皮肌炎并发噬血细胞综合征患者的护理[J]. 中华护理杂志, 2026, 61(7): 892-896.
[3]	管颖慧, 谢鑑辉, 欧阳雅琦, 徐乐, 田佳琦, 王琼. 1型糖尿病青少年向成人医疗过渡体验的Meta整合[J]. 中华护理杂志, 2026, 61(7): 979-985.
[4]	刘晓, 李丽, 施忠英. 青少年神经性厌食患者及其父母出院准备体验及需求的质性研究[J]. 中华护理杂志, 2026, 61(6): 814-821.
[5]	中华护理学会人文护理专业委员会, 中华护理学会急诊护理专业委员会, （执笔：刘义兰, 汪唯, 甘秀妮, 朱陈萍, 杨霞, 熊莉娟, 朱丽辉, 徐翠荣, 郭舒婕, 张洁, 金晓燕, 李君, 李丽, 黄素芳, 王晓洁, 周晨曦, 李映兰. 对急诊科护士的人文关怀策略专家共识[J]. 中华护理杂志, 2026, 61(5): 612-615.
[6]	中国抗癌协会肿瘤康复整合护理专业委员会, （执笔：钟就娣, 王影新, 刘飞, 潜艳, 康璐, 颜红艳, 杨明雪, 廖洋洋, 刘群红. 老年肺癌患者术后分级运动的专家共识[J]. 中华护理杂志, 2026, 61(5): 616-621.
[7]	中华医学会骨科学分会护理学组执笔：梅迎雪, 韩梦月, 潘韩丽, 韩冰, 杨旭. 骨科大手术患者静脉血栓栓塞症预防专家共识[J]. 中华护理杂志, 2026, 61(4): 437-441.
[8]	中华护理学会肿瘤护理专业委员会, 上海市抗癌协会肿瘤护理专业委员会 (执笔：王心茹, 张晓菊, 陆宇晗, 陆宇晗, 陆箴琦, 杨瑒). 抗肿瘤药物所致中性粒细胞减少患者感染预防指导专家共识[J]. 中华护理杂志, 2026, 61(17): 2345-2350.
[9]	陈金淮, 史梦宇, 黄崇安, 白艳雯, 许玲梦, 王谊. 重度青少年特发性脊柱侧凸患儿全病程护理管理流程的优化及效果研究[J]. 中华护理杂志, 2026, 61(16): 2201-2208.
[10]	中华护理学会肿瘤护理专业委员会（执笔：林细铃, 王丽英, 王海燕, 覃惠英, 石思梅, 李佳）. 日间化疗患者居家自我管理指导专家共识[J]. 中华护理杂志, 2026, 61(15): 2061-2068.
[11]	重庆市护理学会西藏护理学会（执笔任：洪艳, 潘龙芳, 唐萍, 冯家瑶, 林玲, 梁毅, 嘎多, 色吉那, 格桑罗布）. 高原成人低氧血症患者氧气吸入疗法护理专家共识[J]. 中华护理杂志, 2026, 61(15): 2069-2075.
[12]	中华护理学会肿瘤护理专业委员会中国抗癌协会放射治疗整合护理专业委员会(执笔：陈丽, 罗珏, 张晓菊, 陆箴琦, 谢茗珠, 陆宇晗). 肿瘤患者放射性皮肤损伤自我管理指导专家共识[J]. 中华护理杂志, 2026, 61(13): 1784-1791.
[13]	中华护理学会呼吸护理专业委员会, 国家儿童医学中心儿科护理联盟小儿呼吸（哮喘）学组, 湖南省护理学会儿科专业委员会（执笔：刘花艳, 曾珊, 成守珍, 梁湘, 安照辉, 谢鑑辉, 刘玉琳, 宋楠, 李德丽, 周金艳, 胡艳军, ）. 儿童气道狭窄球囊扩张术围手术期护理专家共识[J]. 中华护理杂志, 2026, 61(12): 1628-1636.
[14]	中华护理学会肿瘤护理专业委员会, 中国抗癌协会放射治疗整合护理专业委员会, 山东省护理学会肿瘤护理专业委员会（执笔：孟英涛, 张晓菊, 陆宇晗, ）. 肿瘤患者质子放疗全程护理专家共识[J]. 中华护理杂志, 2026, 61(12): 1637-1643.
[15]	北京护理学会急诊专业委员会（执笔：赵丽新, 王蕾, 李春燕, 张怡宁, 邵瑞, 王兴圣, 李倩倩, 李伶宣, 贾燕瑞, ）. 心脏骤停后目标温度管理护理专家共识[J]. 中华护理杂志, 2026, 61(10): 1338-1346.