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.
{"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}
Emily Nurre, Aimee W. Smith, Marie-Pierre Rodriguez, A. Modi
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.
从儿科到成人医疗保健的过渡是青少年和年轻成人(AYAs)癫痫的高风险时期。我们的目的是检查患者、护理人员和提供者对过渡准备的看法，以及在过渡准备的背景下患者-提供者联盟的影响。我们的横断面研究包括82例过渡性癫痫患者。患者，护理人员和提供者完成问卷调查(例如，过渡准备和工作联盟)。统计分析包括独立样本和配对t检验。参与者平均年龄为17.3±2.8岁，54%为女性，84%为白人(非西班牙裔)，38%患有全身性癫痫。护理人员报告的转变准备程度明显高于他们的辅助护士(t (72) = - 10.6, p < 0.001)。AYAs和供应商报告了相似的联盟得分。认为患者准备好过渡的提供者有更高的患者报告的过渡准备和提供者报告的联盟得分。这些数据表明，患者和提供者在过渡过程中很好地协调一致，提供者适当地认识到过渡所需的关键领域。护理人员和患者对过渡准备程度有不同的看法，突出了评估两种独特过渡观点的重要性。专门的过渡方案可能有利于改善过渡准备，并增加患者、护理人员和提供者之间的一致性。
{"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}
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.
{"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}
G. Jones, Teresa Hickam, Courtney D Wellman, Ann C. Modrcin, A. Abdelmoity, J. Le Pichon
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.
{"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}
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.
{"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}
Abstract Ketogenic diets are high-fat, low-carbohydrate diets designed to alter metabolism, induce nutritional ketosis, and reduce seizures in patients with epilepsy. In the past 15 to 20 years, the diets have been refined, gaining momentum in the treatment of resistant epilepsy. As ketogenic diets have gained popularity for treatment of pediatric epilepsies, an increasing number of adolescents treated with dietary therapy are approaching the age of transitioning their care to adult providers. Transition of care for this vulnerable population brings unique challenges posed by a paucity of adult providers who prescribe ketogenic diets, a lack of adult nutritionists trained in dietary therapy for epilepsy, and reluctance of pediatric patients to transition care. In this article, we will discuss the rationale for establishing transition protocols for young adult patients with epilepsy and present guidelines for transition of care for patients treated with dietary therapy for epilepsy.
{"title":"Transition of Care for Adolescent and Young Adult Patients on Dietary Therapy for Epilepsy","authors":"K. Seaborg, Kelly Faltersack, E. Felton","doi":"10.1055/s-0040-1716550","DOIUrl":"https://doi.org/10.1055/s-0040-1716550","url":null,"abstract":"Abstract Ketogenic diets are high-fat, low-carbohydrate diets designed to alter metabolism, induce nutritional ketosis, and reduce seizures in patients with epilepsy. In the past 15 to 20 years, the diets have been refined, gaining momentum in the treatment of resistant epilepsy. As ketogenic diets have gained popularity for treatment of pediatric epilepsies, an increasing number of adolescents treated with dietary therapy are approaching the age of transitioning their care to adult providers. Transition of care for this vulnerable population brings unique challenges posed by a paucity of adult providers who prescribe ketogenic diets, a lack of adult nutritionists trained in dietary therapy for epilepsy, and reluctance of pediatric patients to transition care. In this article, we will discuss the rationale for establishing transition protocols for young adult patients with epilepsy and present guidelines for transition of care for patients treated with dietary therapy for epilepsy.","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":"85784249","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}
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.
当患有癫痫的青少年准备从儿科护理过渡到成人护理时，心理健康问题变得尤其成问题。根据指导方针，建立了一个过渡性诊所，进行持续的心理健康评估，为评分在中度或更高严重程度范围内的患者提供治疗。为了检验我们的癫痫过渡诊所的有效性和对过渡年龄青少年心理健康的影响，我们比较了36名参与者(M = 15.82岁，24名男性)的基线和一年随访数据。结果显示，在随访中，大多数参与者的心理健康得分有所改善或相当。此外，达到心理健康治疗阈值的参与者心理健康状况显著改善(t = 3.19, p = 0.015)，而未达到阈值的参与者心理健康状况恶化(t = - 2.50, p = 0.019)。具体来看心理健康影响，那些心理健康状况恶化的人的生活质量明显恶化(t = 3.35, p = 0.012)。此外，那些没有心理健康问题的人表现出改善的过渡技能(t = - 3.86, p = 0.002)，而那些有心理健康问题的人则没有。结果表明，过渡性门诊对过渡性青少年心理健康的帮助是有效的。此外，研究结果表明，解决这些心理健康问题对于确保这些患者的成功过渡和最佳结果至关重要。
{"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}
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.
{"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}
Abstract This clinical scenario describes a situation where drug-resistant focal epilepsy could have been treated with specific surgery, but a mixture of nonclinical factors led to a different management. The epilepsy started at the age of 6 years and the assessment for other treatment options by this team was done at the age of 12 years. Financial factors were important in the decisions that had to be made and effectively perhaps decisive.
{"title":"Impact of Nonclinical Factors on Treatment Decisions: What Can and Cannot Be Done and Why?","authors":"Matthew T. Sweney","doi":"10.1055/s-0040-1716486","DOIUrl":"https://doi.org/10.1055/s-0040-1716486","url":null,"abstract":"Abstract This clinical scenario describes a situation where drug-resistant focal epilepsy could have been treated with specific surgery, but a mixture of nonclinical factors led to a different management. The epilepsy started at the age of 6 years and the assessment for other treatment options by this team was done at the age of 12 years. Financial factors were important in the decisions that had to be made and effectively perhaps decisive.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":null,"pages":null},"PeriodicalIF":0.2,"publicationDate":"2020-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77675868","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}
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.
{"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}
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