A survey of adult caregivers of people with developmental and epileptic encephalopathies: A long-term care planning needs assessment

IF 2.3 3区医学 Q2 BEHAVIORAL SCIENCES

Epilepsy & Behavior Pub Date : 2025-08-30 DOI:10.1016/j.yebeh.2025.110677

Danielle M. Andrade , Laurie D Bailey , Mary Anne Meskis , Veronica Hood , Sophie Ferreira , Tracy Dixon-Salazar , Jennifer Griffin , M. Scott Perry

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引用次数: 0

Abstract

Objective

Provide the perspective of caregivers planning for adulthood in people with developmental and epileptic encephalopathies (DEEs).

Results

Family members (N = 134) of people with DEE (1–44 years old) responded to an anonymous, internet-based survey to assess the needs of DEE families. Respondents included parents/guardians (n = 121, 90.3 %) and adult siblings ≥18y (n = 13, 9.7 %). Diagnoses included Dravet syndrome (n = 71), Lennox-Gastaut syndrome (n = 38), PCDH19-related epilepsy syndrome (n = 8), CDKL5 deficiency disorder (n = 5), SYNGAP1-related DEE (n = 5), STXBP1-related DEE (n = 3), Dup15q syndrome (n = 2), infantile spasms and NPRL2 seizure disorder (dual diagnosis, n = 1), and Fragile X syndrome (n = 1). Constant safety monitoring was required for many people with DEE (82.1 %). Between 81.3 % and 92.5 % of people with DEE experienced developmental delays, intellectual disability, delayed language and speech issues, and movement and/or balance issues. Overall, 29 (21.6 %) respondents reported having adequate access to long-term adult care planning information. Medical, legal, and financial planning was completed by 22 (18.2 %) to 46 (38.0 %) parent/guardian respondents. Most adult siblings (12/13, 92.3 %) planned to receive responsibility for future care of their sibling with DEE. Respondents accessed relevant information via disease-specific patient organizations (81.3 %), other patients and/or caregivers (67.9 %), social media (53.7 %), primary care physicians (40.3 %), nurses (14.2 %), and neurologists (1.5 %). Respondents indicated concern as the people with DEE transition into adulthood.

Significance

Caregivers of adults with DEE are often family members, including adult siblings. Caregivers/families may benefit from receiving additional support to facilitate future planning of transition to adult care. The healthcare system may require changes to facilitate successful medical transition.

查看原文本刊更多论文

发展性和癫痫性脑病患者成人照护者调查：长期照护计划需求评估

目的为发育性和癫痫性脑病（dei）患者的成年照护者规划提供参考。结果：对1-44岁DEE患者的家庭成员（N = 134）进行了一项匿名的网络调查，以评估DEE家庭的需求。受访者包括父母/监护人（n = 121, 90.3%）和年龄≥18岁的成年兄弟姐妹（n = 13, 9.7%）。诊断包括Dravet综合征（n = 71）、lenox - gastaut综合征（n = 38）、pcdh19相关癫痫综合征（n = 8）、CDKL5缺乏症（n = 5）、syngap1相关DEE （n = 5）、stxbp1相关DEE （n = 3）、Dup15q综合征（n = 2）、婴儿痉挛和NPRL2发作障碍（双重诊断，n = 1）、脆性X综合征（n = 1）。许多DEE患者（82.1%）需要持续的安全监测。81.3%至92.5%的DEE患者有发育迟缓、智力残疾、语言障碍、运动和/或平衡问题。总体而言，29名（21.6%）受访者报告有足够的机会获得长期成人护理计划信息。22名（18.2%）至46名（38.0%）家长/监护人受访者完成了医疗、法律和财务规划。大多数成年兄弟姐妹（12/13,92.3%）计划承担未来照顾DEE兄弟姐妹的责任。受访者通过特定疾病患者组织（81.3%）、其他患者和/或护理人员（67.9%）、社交媒体（53.7%）、初级保健医生（40.3%）、护士（14.2%）和神经科医生（1.5%）获取相关信息。受访者表示，随着DEE患者进入成年期，他们感到担忧。意义：患有DEE的成年人的照顾者通常是家庭成员，包括成年的兄弟姐妹。照顾者/家庭可能会受益于获得额外的支持，以促进未来向成人护理过渡的规划。医疗保健系统可能需要改变，以促进成功的医疗过渡。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Epilepsy & Behavior 医学-行为科学

CiteScore

5.40

自引率

15.40%

发文量

385

审稿时长

43 days

期刊介绍： Epilepsy & Behavior is the fastest-growing international journal uniquely devoted to the rapid dissemination of the most current information available on the behavioral aspects of seizures and epilepsy. Epilepsy & Behavior presents original peer-reviewed articles based on laboratory and clinical research. Topics are drawn from a variety of fields, including clinical neurology, neurosurgery, neuropsychiatry, neuropsychology, neurophysiology, neuropharmacology, and neuroimaging. From September 2012 Epilepsy & Behavior stopped accepting Case Reports for publication in the journal. From this date authors who submit to Epilepsy & Behavior will be offered a transfer or asked to resubmit their Case Reports to its new sister journal, Epilepsy & Behavior Case Reports.