William A. Schraegle, S. Young, Eman K. Rettig, Angie R. Payne, Janet Wilson, Elizabeth A. Wedberg-Sivam, J. Titus
Abstract The transition from pediatric to adult health care systems is challenging for many adolescents with epilepsy and their families, and those challenges are compounded for adolescents with comorbid intellectual disabilities and epilepsy (ID-E). Many traditional transition pathways to adult care are inadequate, as they fail to address important considerations unique to the ID-E population or are absent entirely. Poor organization of care during critical transition periods increases the risks of sudden unexpected death in epilepsy, suboptimal seizure control, inadequate management of comorbidities, and poor psychological and social outcomes. The literature lacks systematic studies on effective transition programs for this population. The present review provides an overview of the main themes important in care transitions for the ID-E population: (1) precise diagnosis and management of seizures; (2) mental health and medical comorbidities affecting care; (3) accessing behavioral, habilitative, legal, financial, and community resources; and (4) caretaker support. We propose a specific framework which includes targeted recommendations of minimum care standards for youth with ID-E transitioning to adult care.
{"title":"Improving Transitional Services for Adolescents and Young Adults with Epilepsy and Intellectual Disability","authors":"William A. Schraegle, S. Young, Eman K. Rettig, Angie R. Payne, Janet Wilson, Elizabeth A. Wedberg-Sivam, J. Titus","doi":"10.1055/s-0040-1716915","DOIUrl":"https://doi.org/10.1055/s-0040-1716915","url":null,"abstract":"Abstract The transition from pediatric to adult health care systems is challenging for many adolescents with epilepsy and their families, and those challenges are compounded for adolescents with comorbid intellectual disabilities and epilepsy (ID-E). Many traditional transition pathways to adult care are inadequate, as they fail to address important considerations unique to the ID-E population or are absent entirely. Poor organization of care during critical transition periods increases the risks of sudden unexpected death in epilepsy, suboptimal seizure control, inadequate management of comorbidities, and poor psychological and social outcomes. The literature lacks systematic studies on effective transition programs for this population. The present review provides an overview of the main themes important in care transitions for the ID-E population: (1) precise diagnosis and management of seizures; (2) mental health and medical comorbidities affecting care; (3) accessing behavioral, habilitative, legal, financial, and community resources; and (4) caretaker support. We propose a specific framework which includes targeted recommendations of minimum care standards for youth with ID-E transitioning to adult care.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"216 1","pages":"164 - 171"},"PeriodicalIF":0.2,"publicationDate":"2020-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75029361","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}
Amisha G Patel, S. Jan, C. Steinway, Alex F. Bullock, Adam Greenberg, Bethany Thomas, Lawrence Fried, L. Brown, Marissa Digiovine
Abstract Epilepsy is the fourth most common neurological disorder and affects people of all ages; however, at least 40% of children will continue to have seizures into adulthood. Children and youth with epilepsy (CYE) experience neurologic and extraneurologic changes that can negatively impact self-management skills necessary for optimal adult function. Those with intellectual disability have additional transition challenges. Improving the medical transition process for all CYE is vital and necessary. In this article, we will review some of the biologic, behavioral, psychologic, therapeutic, and social considerations for CYE complicating transition. We will then describe general approaches to transitioning CYE to adult care, specifically methods involving creating a framework with overarching transition aims in place, and share our experience at the Children's Hospital of Philadelphia implementing these approaches. Our comprehensive model for a formal transition policy, team structure, and ongoing assessment supporting CYE transitioning into adult care is a practical program that can be integrated into clinical care. Proper investment in the transition process will translate into measurable, significant long-term benefits for all involved.
{"title":"Epilepsy Transition in Ambulatory Care: Experiences and Benefits of an Epilepsy Transition Team","authors":"Amisha G Patel, S. Jan, C. Steinway, Alex F. Bullock, Adam Greenberg, Bethany Thomas, Lawrence Fried, L. Brown, Marissa Digiovine","doi":"10.1055/s-0040-1716913","DOIUrl":"https://doi.org/10.1055/s-0040-1716913","url":null,"abstract":"Abstract Epilepsy is the fourth most common neurological disorder and affects people of all ages; however, at least 40% of children will continue to have seizures into adulthood. Children and youth with epilepsy (CYE) experience neurologic and extraneurologic changes that can negatively impact self-management skills necessary for optimal adult function. Those with intellectual disability have additional transition challenges. Improving the medical transition process for all CYE is vital and necessary. In this article, we will review some of the biologic, behavioral, psychologic, therapeutic, and social considerations for CYE complicating transition. We will then describe general approaches to transitioning CYE to adult care, specifically methods involving creating a framework with overarching transition aims in place, and share our experience at the Children's Hospital of Philadelphia implementing these approaches. Our comprehensive model for a formal transition policy, team structure, and ongoing assessment supporting CYE transitioning into adult care is a practical program that can be integrated into clinical care. Proper investment in the transition process will translate into measurable, significant long-term benefits for all involved.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"11 1","pages":"143 - 149"},"PeriodicalIF":0.2,"publicationDate":"2020-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86544958","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 Consensus statements and clinical reports exist to guide the transition of youth from pediatric to adult healthcare services. Across the range of youth with no chronic health conditions to those with the most complex disabilities, the standards of practice continue to vary broadly across the country and internationally. Youth and young adults with combined conditions of epilepsy with intellectual disability are a small subset of the total population of young adults who share common needs. These include a system of supports that supplement each person's limitations in autonomy and self-management. Caregivers play significant roles in their lives, whether they are family members or paid direct service providers. Medical decision making and treatment adherence require specific adaptations for patients whose independence due to disability is unlikely. Key issues related to tuberous sclerosis complex, neurofibromatosis, and Rett and Sturge–Weber syndromes will be highlighted.
{"title":"Transitioning Ambulatory Medicine from Pediatrics to Adult Care for Patients with Epilepsy and Intellectual Disability","authors":"Derryl Miller, M. Felker, M. Ciccarelli","doi":"10.1055/s-0040-1717135","DOIUrl":"https://doi.org/10.1055/s-0040-1717135","url":null,"abstract":"Abstract Consensus statements and clinical reports exist to guide the transition of youth from pediatric to adult healthcare services. Across the range of youth with no chronic health conditions to those with the most complex disabilities, the standards of practice continue to vary broadly across the country and internationally. Youth and young adults with combined conditions of epilepsy with intellectual disability are a small subset of the total population of young adults who share common needs. These include a system of supports that supplement each person's limitations in autonomy and self-management. Caregivers play significant roles in their lives, whether they are family members or paid direct service providers. Medical decision making and treatment adherence require specific adaptations for patients whose independence due to disability is unlikely. Key issues related to tuberous sclerosis complex, neurofibromatosis, and Rett and Sturge–Weber syndromes will be highlighted.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"43 1","pages":"172 - 176"},"PeriodicalIF":0.2,"publicationDate":"2020-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78629172","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}
V. Aghamollaii, Shakila Meshkat, S. Bakhtiari, E. Alehabib, S. G. Firouzabadi, Samira Molaei, M. Kruer, H. Darvish
Abstract Guanidinoacetate methyltransferase (GAMT) deficiency is an autosomal recessive inborn error of creatine synthesis that results in intellectual disability, epilepsy, expressive language delay, and dystonia. We report data from two siblings with an uncommon GAMT deficiency phenotype and their clinical, biochemical, imaging, and treatment findings. The older sibling had intellectual disability, epilepsy, and generalized dystonia. The younger sibling had intellectual disability and generalized dystonia. After treatment with creatine, verbal fluency improved, as well as dystonia and aggression. This study confirms that in patients with unexplained intellectual disability, epilepsy, and/or movement disorders, GAMT deficiency should be considered. GAMT-associated cerebral creatine deficiency syndrome is a potentially treatable condition and can be identified by elevated levels of guanidinoacetate in plasma or urine or by a significantly decreased creatine peak on magnetic resonance spectroscopy.
{"title":"Guanidinoacetate Methyltransferase Deficiency, a Treatable Neurodevelopmental Disorder","authors":"V. Aghamollaii, Shakila Meshkat, S. Bakhtiari, E. Alehabib, S. G. Firouzabadi, Samira Molaei, M. Kruer, H. Darvish","doi":"10.1055/s-0042-1760291","DOIUrl":"https://doi.org/10.1055/s-0042-1760291","url":null,"abstract":"Abstract Guanidinoacetate methyltransferase (GAMT) deficiency is an autosomal recessive inborn error of creatine synthesis that results in intellectual disability, epilepsy, expressive language delay, and dystonia. We report data from two siblings with an uncommon GAMT deficiency phenotype and their clinical, biochemical, imaging, and treatment findings. The older sibling had intellectual disability, epilepsy, and generalized dystonia. The younger sibling had intellectual disability and generalized dystonia. After treatment with creatine, verbal fluency improved, as well as dystonia and aggression. This study confirms that in patients with unexplained intellectual disability, epilepsy, and/or movement disorders, GAMT deficiency should be considered. GAMT-associated cerebral creatine deficiency syndrome is a potentially treatable condition and can be identified by elevated levels of guanidinoacetate in plasma or urine or by a significantly decreased creatine peak on magnetic resonance spectroscopy.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"297 1","pages":"084 - 087"},"PeriodicalIF":0.2,"publicationDate":"2020-09-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89005774","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 There is scarce evidence in review of the available literature to support a clear and superior model for the transition of care for epilepsy patients from pediatric to adult centers. Anecdotally, there is a common perception that families are reluctant to make this change and that the successful transition of care for epilepsy can be a challenge for patients, families, and physicians. As part of the effort to prepare the patient and family for the adult model of care, several treatment issues should be addressed. In this article, we discuss the specific challenges for physicians in transition of care for epilepsy patients from a pharmacological standpoint, which include differences in metabolism and pharmacodynamics that can impact tolerability or efficacy of antiepileptic medications, lifestyle changes affecting medication compliance and seizure control, acquired adult health conditions necessitating new medications that may result in adverse drug interactions, and adult neurologists' potential lack of familiarity with certain medications typically used in the pediatric epilepsy population. We offer this as a guide to avoid one of the many possible pitfalls when epilepsy patients transition to adult care.
{"title":"Pharmacological Considerations When Transitioning the Care of Epilepsy Patients from Pediatric to Adult Epilepsy Centers","authors":"Natalie Guido-Estrada, Shifteh Sattar","doi":"10.1055/s-0040-1716865","DOIUrl":"https://doi.org/10.1055/s-0040-1716865","url":null,"abstract":"Abstract There is scarce evidence in review of the available literature to support a clear and superior model for the transition of care for epilepsy patients from pediatric to adult centers. Anecdotally, there is a common perception that families are reluctant to make this change and that the successful transition of care for epilepsy can be a challenge for patients, families, and physicians. As part of the effort to prepare the patient and family for the adult model of care, several treatment issues should be addressed. In this article, we discuss the specific challenges for physicians in transition of care for epilepsy patients from a pharmacological standpoint, which include differences in metabolism and pharmacodynamics that can impact tolerability or efficacy of antiepileptic medications, lifestyle changes affecting medication compliance and seizure control, acquired adult health conditions necessitating new medications that may result in adverse drug interactions, and adult neurologists' potential lack of familiarity with certain medications typically used in the pediatric epilepsy population. We offer this as a guide to avoid one of the many possible pitfalls when epilepsy patients transition to adult care.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"146 1","pages":"177 - 185"},"PeriodicalIF":0.2,"publicationDate":"2020-09-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85352198","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 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":"1 1","pages":"150 - 155"},"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":"21 1","pages":"156 - 163"},"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":"4 1","pages":"106 - 113"},"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":"27 1","pages":"119 - 124"},"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":"9 1","pages":"125 - 134"},"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}
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