Journal of Pediatric Epilepsy最新文献_第9页

Managing Transition of Care in Adolescent Females with Epilepsy 青春期女性癫痫患者护理过渡期的管理

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Journal of Pediatric Epilepsy Pub Date : 2020-09-23 DOI: 10.1055/s-0040-1716866

Roohi Katyal, D. Singhal

{"title":"Managing Transition of Care in Adolescent Females with Epilepsy","authors":"Roohi Katyal, D. Singhal","doi":"10.1055/s-0040-1716866","DOIUrl":"https://doi.org/10.1055/s-0040-1716866","url":null,"abstract":"Abstract Transition of care from pediatric epilepsy clinics to adult health care is often a challenging process, especially due to limited availability of relevant guidelines. It carries even more significant implications in specific population subsets such as adolescent females, given a myriad of physiological as well as psychosocial changes seen in this age group. Women with epilepsy face distinct challenges because of hormonal variations on seizures (catamenial epilepsy). Furthermore, seizures and antiepileptic drugs impact menstruation, pregnancy, and lactation. These patients are at a higher risk for developing mental health problems, and a close follow-up with appropriate screening for psychiatric disorders is prudent. Several factors contributing to poor transition of care include limited availability of a multidisciplinary set-up and social-support services, delayed referral to specialist(s), and tendency for treatment nonadherence. In this review, we discuss the current scenario of transition of care in adolescent females with epilepsy and explore avenues for improvement based on our subspecialty clinic experiences. We illustrate the value of interdisciplinary care proactively involving neurologists/epileptologists, primary care physicians, obstetricians–gynecologists, and relevant social services and emphasize shared decision-making, effective contraceptive methods, preconceptual counseling, maintenance of bone-health, and enhanced quality of life.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88921276","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Patient, Caregiver, and Provider Perceptions of Transition Readiness and Therapeutic Alliance during Transition from Pediatric to Adult Care in Epilepsy 患者，护理者和提供者的过渡准备和治疗联盟的看法，从儿科过渡到成人治疗癫痫

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Journal of Pediatric Epilepsy Pub Date : 2020-09-23 DOI: 10.1055/s-0040-1716914

Emily Nurre, Aimee W. Smith, Marie-Pierre Rodriguez, A. Modi

{"title":"Patient, Caregiver, and Provider Perceptions of Transition Readiness and Therapeutic Alliance during Transition from Pediatric to Adult Care in Epilepsy","authors":"Emily Nurre, Aimee W. Smith, Marie-Pierre Rodriguez, A. Modi","doi":"10.1055/s-0040-1716914","DOIUrl":"https://doi.org/10.1055/s-0040-1716914","url":null,"abstract":"Abstract Transition from pediatric to adult health care is a time of high risk for adolescents and young adults (AYAs) with epilepsy. Our aims are to examine patient, caregiver, and provider perceptions of transition readiness and the influence of patient-provider alliance in the context of transition readiness. Our cross-sectional study included 82 AYAs with epilepsy prior to transition. Patients, caregivers, and providers completed questionnaires (e.g., transition readiness and working alliance). Statistical analyses included independent samples and paired t-tests. Participants were 17.3 ± 2.8 years on average, 54% were females, 84% were White (non-Hispanic), and 38% had generalized epilepsy. Caregivers reported significantly higher transition readiness than their AYAs (t (72) = −10.6, p < 0.001). AYAs and providers reported similar alliance scores. Providers who felt patients were ready to transition had higher patient-reported transition readiness and provider-reported alliance scores. These data suggest that patients and providers are well aligned in the transition process, and providers appropriately perceive key areas necessary for transition. Caregivers and patients had discrepant perceptions of transition readiness, highlighting the importance of assessing both unique transition perspectives. Dedicated transition programs are likely to be beneficial in improving transition readiness and increase alignment across patients, caregivers, and providers.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75805460","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 1

An Overview of Digital Health in the Transition of Pediatric to Adult Epilepsy Care 数字健康在儿童到成人癫痫护理过渡中的概述

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Journal of Pediatric Epilepsy Pub Date : 2020-09-23 DOI: 10.1055/s-0040-1716825

Ysabeau Bernard-Willis, E. Oliveira, S. Lakhan

{"title":"An Overview of Digital Health in the Transition of Pediatric to Adult Epilepsy Care","authors":"Ysabeau Bernard-Willis, E. Oliveira, S. Lakhan","doi":"10.1055/s-0040-1716825","DOIUrl":"https://doi.org/10.1055/s-0040-1716825","url":null,"abstract":"Abstract Children with epilepsy often have impairments in cognitive and behavioral functioning which may hinder socio-occupational well-being as they reach adulthood. Adolescents with epilepsy have the added worry of health problems while starting the transition from family-centered pediatric care into largely autonomous adult care. If this transition is not appropriately planned and resourced, it may result in medical mistrust, nonadherence, and worsening biopsychosocial health as an adult. In recent years, there has been increased availability of digital health solutions that may be used during this stark change in care and treating teams. The digital health landscape includes a wide variety of technologies meant to address challenges faced by patients, caregivers, medical professionals, and health care systems. These technologies include mobile health products and wearable devices (e.g., seizure monitors and trackers, smartphone passive data collection), digital therapeutics (e.g., cognitive/behavioral health management; digital speech–language therapy), telehealth services (e.g., teleneurology visits), and health information technology (e.g., electronic medical records with patient portals). Such digital health solutions may empower patients in their journey toward optimal brain health during the vulnerable period of pediatric to adult care transition. Further research is needed to validate and measure their impact on clinical outcomes, health economics, and quality of life.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88601453","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Transition to Adult Care in Youth with Epilepsy: One Center's Experience with a Transition Program and Its Integration within Telemedicine 过渡到成人护理的青少年癫痫:一个中心的经验与过渡方案及其集成在远程医疗

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Journal of Pediatric Epilepsy Pub Date : 2020-09-23 DOI: 10.1055/s-0040-1716826

G. Jones, Teresa Hickam, Courtney D Wellman, Ann C. Modrcin, A. Abdelmoity, J. Le Pichon

{"title":"Transition to Adult Care in Youth with Epilepsy: One Center's Experience with a Transition Program and Its Integration within Telemedicine","authors":"G. Jones, Teresa Hickam, Courtney D Wellman, Ann C. Modrcin, A. Abdelmoity, J. Le Pichon","doi":"10.1055/s-0040-1716826","DOIUrl":"https://doi.org/10.1055/s-0040-1716826","url":null,"abstract":"Abstract Neurology patients often have disorders that require life-long care and ongoing treatment. The transition of pediatric neurology patients to adult neurology care, particularly in epilepsy, is an evolving concept that is recognized as important for patients and families. Children's Mercy Hospital, Kansas City has an established transition program that has been integrated into the neurology clinic as a part of standard care. Our experience and utilization of a transition program has provided our patients with a unique opportunity, empowering them to navigate their own care and create a seamless transition to adult neurology. Through a collaboration with the American Academy of Pediatrics and the Department of Health Resources and Services Administration, we have proposed a practice model designed to create a medical home for children and youth with epilepsy in rural underserved areas of Kansas. One of the core end points of this study is transition of care for youth with epilepsy using telemedicine. In this article, we describe our experience with a transition program for epilepsy patients and describe the very early implementation of this program to a telemedicine transition program designed for underserved rural populations.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83349458","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Pediatric to Adult Epilepsy Transition in Ambulatory Care: Benefits of a Multidisciplinary Epilepsy Transition Clinic 儿科到成人癫痫过渡门诊护理:多学科癫痫过渡诊所的好处

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Journal of Pediatric Epilepsy Pub Date : 2020-09-18 DOI: 10.1055/s-0040-1716827

Jaime-Dawn E. Twanow, Sarita Maturu, N. Khandker

{"title":"Pediatric to Adult Epilepsy Transition in Ambulatory Care: Benefits of a Multidisciplinary Epilepsy Transition Clinic","authors":"Jaime-Dawn E. Twanow, Sarita Maturu, N. Khandker","doi":"10.1055/s-0040-1716827","DOIUrl":"https://doi.org/10.1055/s-0040-1716827","url":null,"abstract":"Abstract Children with epilepsy comprise 3.2% of the estimated 500,000 youth with special medical needs who move from the pediatric to adult care model annually. These 16,000 children who require transfer each year represent a challenging subset of 470,000 youth living with epilepsy in the United States. Transition and transfer of care are complex and require gradual processes. This period for youth with epilepsy is often associated with inadequate follow-up and increased risk of nonadherence. Furthermore, youth and adults with epilepsy are known to have suboptimal social and emotional outcomes compared with peers, with high rates of under education, underemployment, poverty, and struggles with mental health. The goal of improving social determinants and continuity of care prompted the development of formal epilepsy transition clinics. Multiple clinic models exist, sharing the overarching goal of supporting youth while building self-management skills, tailored to age and developmental level. Early evidence shows that transition discussion leads to statistically significant increases in transfer readiness and self-efficacy in young adults with epilepsy. Our center boasts a 100% attendance rate at our transition and transfer clinic and 78% compliance with follow-up, further demonstrating that patients and families value quality transition programming.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82100828","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Transition of Care for Adolescent and Young Adult Patients on Dietary Therapy for Epilepsy 青少年和青壮年癫痫患者饮食治疗的护理转变

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Journal of Pediatric Epilepsy Pub Date : 2020-09-18 DOI: 10.1055/s-0040-1716550

K. Seaborg, Kelly Faltersack, E. Felton

引用次数: 0

The Importance of Assessing and Treating Mental Health in Transition-Aged Adolescents with Epilepsy: A 1-Year Follow-up 评估和治疗过渡年龄青少年癫痫患者心理健康的重要性:1年随访

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Journal of Pediatric Epilepsy Pub Date : 2020-09-18 DOI: 10.1055/s-0040-1716867

S. Healy, T. Fantaneanu, S. Whiting

{"title":"The Importance of Assessing and Treating Mental Health in Transition-Aged Adolescents with Epilepsy: A 1-Year Follow-up","authors":"S. Healy, T. Fantaneanu, S. Whiting","doi":"10.1055/s-0040-1716867","DOIUrl":"https://doi.org/10.1055/s-0040-1716867","url":null,"abstract":"Abstract Mental health issues become especially problematic when adolescents with epilepsy are preparing to transition from pediatric to adult care. Consistent with guidelines, a transition clinic with ongoing mental health assessment was created, providing treatment to patients scoring in the moderate severity range or higher. In order to examine the effectiveness of our epilepsy transition clinic and the impact of mental health in transition-aged adolescents, baseline and one-year follow-up data were compared in 36 participants (M = 15.82 years, 24 males). Results showed that the majority of participants had improved or comparable mental health scores at follow-up. Furthermore, participants who met threshold for mental health treatment had significantly improved mental health (t = 3.19, p = 0.015), while those who did not showed worsened mental health (t = − 2.50, p = 0.019). Looking specifically at mental health impact, those with worsened mental health showed significantly worsened quality of life (t = 3.35, p = 0.012). Furthermore, those without mental health issues showed improved transition skills (t = − 3.86, p = 0.002), while those with mental health issues did not. Results suggest that the transition clinic is effective in helping transition-aged adolescents with their mental health. Additionally, findings suggest that addressing these mental health issues are essential to ensuring successful transitions and the best outcomes in these patients.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81031109","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Challenges in the Transition of Care Process for Patients with Dravet and Lennox–Gastaut Syndromes Dravet综合征和lenox - gastaut综合征患者护理过程转变中的挑战

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Journal of Pediatric Epilepsy Pub Date : 2020-09-11 DOI: 10.1055/s-0040-1716670

Cemal Karakas, R. Schultz, Jay R. Gavvala

{"title":"Challenges in the Transition of Care Process for Patients with Dravet and Lennox–Gastaut Syndromes","authors":"Cemal Karakas, R. Schultz, Jay R. Gavvala","doi":"10.1055/s-0040-1716670","DOIUrl":"https://doi.org/10.1055/s-0040-1716670","url":null,"abstract":"Abstract Epileptic encephalopathies such as Dravet syndrome (DS) and Lennox–Gastaut syndrome (LGS) present unique challenges in the transition of care not only for the providers but also for the patients and families. Some of these challenges include the complexity of disease process, differences in medication management between children and adults, high incidence of comorbidities such as psychosocial issues, a lack of structured transition process from pediatric to adult care, and the lack of parental knowledge and reluctance to transition to an adult provider. Improving transition readiness and transfer of care are essential to long-term management and continuity of care. Studies show that patients/families who possess transition readiness skills have better health outcomes. Furthermore, participation in a structured transition intervention has been shown to improve transition readiness and utilization of ambulatory care in the adult setting. Reported benefits of implementation of transition planning include increased self-esteem, improved health literacy, fewer emergency room visits, decreased hospitalizations and comorbidities, and fewer school absences. Nevertheless, there is a lack of evidenced-based, family/patient-centered transition model of care. This review's primary goal is to provide an overview of challenges in the transition of care and recommendations for an ideal transition for patients with DS and LGS.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75827843","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 0

Impact of Nonclinical Factors on Treatment Decisions: What Can and Cannot Be Done and Why? 非临床因素对治疗决策的影响:什么能做，什么不能做，为什么?

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Journal of Pediatric Epilepsy Pub Date : 2020-09-01 DOI: 10.1055/s-0040-1716486

Matthew T. Sweney

引用次数: 1

Continued Gap in Seizure Frequency Documentation 扣押频率文件的持续差距

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Journal of Pediatric Epilepsy Pub Date : 2020-08-31 DOI: 10.1055/s-0040-1715461

Andrea Debs, S. Gedela, Anup D. Patel

{"title":"Continued Gap in Seizure Frequency Documentation","authors":"Andrea Debs, S. Gedela, Anup D. Patel","doi":"10.1055/s-0040-1715461","DOIUrl":"https://doi.org/10.1055/s-0040-1715461","url":null,"abstract":"Abstract Proper documentation during neurology clinic visits is essential. Medical providers that document precise and standardized findings aid other providers, nurses, and research personnel. The American Academy of Neurology (AAN) created standardized quality measures in order to improve delivery of care for patients with epilepsy, providers, and systems. In this article, we reviewed a total of 777 charts in order to find documentation on seizure frequency from the most recent clinical visit. Data was collected from electronic healthcare records. During initial chart review, the following information was noted: age, gender, seizure type(s), etiology type(s), provider (neurologist or epileptologist), whether seizure frequency was noted, and the reason for no documentation. The data review represented a sample of the epilepsy population seen at our institution. Of the 734 individuals, 475 patients had seizure frequency documented (65%). Two hundred and fifty-nine (259) people (35%) were missing seizure frequency data. For those individuals, we determined the reasoning behind why this data was not present in the chart note. Of those 259 charts, there were 65 (25%) charts missing seizure frequency, 161 (62%) charts that were vague, and 33 (13%) charts where seizure frequency could not be determined. Based on our findings, the documentation of seizure frequency is a gap in care.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82103995","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

引用次数: 2