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为癫痫青少年和青年准备医疗保健过渡(PATH)研究:年龄和自我效能的重要作用。

Preparing adolescents and young adults with epilepsy for transitioning health care (PATH) study: The important role of age and self-efficacy.

作者信息

Lang Amy C, Laguerre Kirby-Estar, Buschhaus Stacy, Mara Constance A, Fong Susan L, Duncan Christina L, Modi Avani C

机构信息

Cincinnati Children's Hospital Medical Center, United States.

West Virginia University, United States. Electronic address: https://twitter.com/@KirbyEstar.

出版信息

Epilepsy Behav. 2025 Jan;162:110167. doi: 10.1016/j.yebeh.2024.110167. Epub 2024 Nov 30.

Abstract

BACKGROUND

At least 30% of youth with epilepsy will require transition from pediatric to adult neurology care. Many adolescents and young adults (AYAs) with epilepsy are inadequately prepared for health care transition, which may contribute to health care disruptions and decreased quality of life. The current study aimed to add to the growing body of literature on health care transition in epilepsy by characterizing a sample of AYAs with epilepsy and assessing the relationship between pre-existing and behaviorally modifiable factors and epilepsy-specific transition readiness.

METHODS

103 AYAs (M = 17.56; range = 14-21; 54% female; 85% White) with epilepsy and 84 of their caregivers were enrolled from two pediatric hospitals in the United States. Participants provided sociodemographic and medical information and completed questionnaires assessing functioning, epilepsy management, and transition readiness. Data were analyzed using a two-step hierarchical multiple linear regression model with epilepsy-specific transition readiness as the outcome: 1) pre-existing factors (i.e., age, insurance, seizure severity); and 2) behaviorally modifiable factors (i.e., cognitive functioning, medication self-management, epilepsy self-efficacy).

RESULTS

Only 44% of AYAs had discussed health care transition with their pediatric neurologist. The final model was significant, ΔF (3, 90) = 13.45, p < 0.001. Older age and greater epilepsy self-efficacy were associated with greater epilepsy-specific transition readiness.

CONCLUSION

AYAs with greater epilepsy self-efficacy may be better prepared for the transition from pediatric to adult neurology care. Routine assessment of epilepsy self-efficacy and transition readiness starting in early adolescence may help to identify individuals who could benefit from targeted interventions.

摘要

背景

至少30%的癫痫青年需要从儿科神经科护理过渡到成人神经科护理。许多患有癫痫的青少年和青年(AYAs)在医疗保健过渡方面准备不足,这可能导致医疗保健中断和生活质量下降。本研究旨在通过对患有癫痫的AYAs样本进行特征描述,并评估预先存在的和行为上可改变的因素与癫痫特异性过渡准备之间的关系,来补充关于癫痫医疗保健过渡的不断增长的文献。

方法

从美国的两家儿科医院招募了103名患有癫痫的AYAs(平均年龄M = 17.56岁;范围 = 14 - 21岁;54%为女性;85%为白人)及其84名照顾者。参与者提供了社会人口统计学和医疗信息,并完成了评估功能、癫痫管理和过渡准备情况的问卷。使用以癫痫特异性过渡准备情况为结果的两步分层多元线性回归模型对数据进行分析:1)预先存在的因素(即年龄、保险、癫痫发作严重程度);2)行为上可改变的因素(即认知功能、药物自我管理、癫痫自我效能感)。

结果

只有44%的AYAs与他们的儿科神经科医生讨论过医疗保健过渡问题。最终模型具有显著性,ΔF(3, 90) = 13.45,p < 0.001。年龄较大和癫痫自我效能感较高与癫痫特异性过渡准备情况较好相关。

结论

癫痫自我效能感较高的AYAs可能在从儿科神经科护理过渡到成人神经科护理方面准备得更好。从青春期早期开始对癫痫自我效能感和过渡准备情况进行常规评估,可能有助于识别那些可以从有针对性的干预措施中受益的个体。

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Transition to adult care in epilepsy: A systematic review.癫痫患者向成人护理的过渡:一项系统综述。
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Health Care Transition: The Struggle to Define Itself.医疗保健过渡:努力自我定义。
Compr Child Adolesc Nurs. 2023 Sep;46(3):162-176. doi: 10.1080/24694193.2021.1933264. Epub 2021 Jun 28.
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Transition Planning for Chronic Illnesses in the Time of COVID-19.新冠疫情期间慢性病的过渡计划
J Patient Exp. 2020 Dec;7(6):848-850. doi: 10.1177/2374373520978875. Epub 2020 Dec 3.

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