Journal of Pediatric Epilepsy最新文献

{"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":"88 1","pages":"114 - 118"},"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}

{"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":"76 1","pages":"186 - 192"},"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}

{"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":"221 1","pages":"135 - 142"},"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}

{"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":"39 1","pages":"092 - 093"},"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}

{"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":"6 1","pages":"147 - 149"},"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}

{"title":"Ethical Issue as the Limiting Factor for Epilepsy Surgery","authors":"S. Gedela, C. Korff","doi":"10.1055/s-0040-1714355","DOIUrl":"https://doi.org/10.1055/s-0040-1714355","url":null,"abstract":"Abstract Epilepsy is one of the most common neurological disorders with almost one-third of these patients becoming intractable to medical treatments. For some of these patients, epilepsy surgery could be the best option. There are lot of disparities in caring of the epilepsy patients. There are multiple limitations in offering epilepsy surgery for the medically intractable epilepsy patients, resulting in almost 19 years gap from the diagnosis of intractable epilepsy to epilepsy surgery. These limitations range from patient or parental fear to lack of available resources. Sometimes we face an ethical issue being the limitation from doing the right thing for the patient. We want to share our experience with one of our patients with symptomatic medically intractable focal epilepsy from Rasmussen’s encephalitis who could not get the epilepsy surgery treatment because of an ethical issue.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"26 1","pages":"097 - 099"},"PeriodicalIF":0.2,"publicationDate":"2020-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81461959","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}

{"title":"An Overview of Anxiety Disorders and Depression in Children with Epilepsy: A Literature Review","authors":"O. Gökçen, M. Turgut","doi":"10.1055/s-0040-1715566","DOIUrl":"https://doi.org/10.1055/s-0040-1715566","url":null,"abstract":"Abstract Comorbid psychiatric disorders in children with epilepsy have long been a subject of medical literature. Many studies conducted by pediatric neurologists, neurosurgeons, psychiatrists, and psychologists have revealed that psychiatric disorders, including anxiety disorders and depression, are frequently seen in children and adolescents with epilepsy. Due to various etiologies behind epilepsy, causes, manifestation, and treatment of anxiety and depression all have unique aspects. We think there are multiple reasons behind anxiety disorders and depression in children with epilepsy, varying from the physiological nature of the epilepsy itself to the environmental factors such as family, parenting, and social status. In this article, we aim to review the causes, risk factors, and management of anxiety disorders and depression in children with epilepsy.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"13 1","pages":"003 - 012"},"PeriodicalIF":0.2,"publicationDate":"2020-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84182156","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}

{"title":"Practical Ethical Approaches for Common Issues in Pediatric Epilepsy","authors":"C. Lancaster","doi":"10.1055/s-0040-1715563","DOIUrl":"https://doi.org/10.1055/s-0040-1715563","url":null,"abstract":"Abstract The aim of this commentary is to provide clinicians with the tools needed (or, at least, knowledge of where to find them) to navigate the often-turbulent seas of medical ethics. The cases described and questions asked in this issue are not only relevant to pediatric epilepsy but also typical of quandaries faced frequently by health care professionals (HCPs). By examining these cases and extrapolating the ethical questions raised, the clinician will find that there are several ethical approaches that can be taken and may lead to a variety of ways forward. However, by employing the ideas highlighted in this commentary, it is my hope that HCPs will be able to identify these various points of view, evaluate their options, and act in ways that are ethically justifiable.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"30 1","pages":"085 - 091"},"PeriodicalIF":0.2,"publicationDate":"2020-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86808357","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}

{"title":"Ethical Issues in Pediatric Epilepsy","authors":"E. Posner, C. Lancaster","doi":"10.1055/s-0040-1715565","DOIUrl":"https://doi.org/10.1055/s-0040-1715565","url":null,"abstract":"Medicine frequently comes up against ethical dilemmas, for which there are no clear “right” answers. This special issue aims to highlight some of those occurring in pediatric epileptology and raise awareness of potential frameworks to aid clinicians. What readers may recognize through the papers presented is that despite the contributors coming from a wide geographical range, there are recurrent themes that appear throughout 21-century clinical practice. A child who may benefit from surgical interventionmaybe living in theUnited States, Spain, Italy, Romania, and so on, and similar discussion may be required involving health care professionals (HCPs), the patient, and patient advocates. Similar questions arise regardless of country: How much weight should be given to patients’ requests? Who ultimately decides on current treatment? If the patient cannot make a contribution, who should be their representative? Howdowebalance the “pros and cons” of a particular therapeutic regime? Is it ethical to try pediatric patients on drugs that have not been licensed for use in children? Despite the cultural pluralities in the countries represented, the same dilemmas emerge. This suggests that there is a need for an overarching understanding of medical ethics in a way that can be practically employed by the HCPs wherever they work. It would be nice to have a flowchart telling HCPs which “morally correct” action should be taken in each situation, but this unfortunately is not possible.What is possible, however, is that practitioners are equipped with knowledge about moral theories and ethical approaches that enable them to make ethically sound (and justifiable) decisions, which take into account cultural, social, religious, and legal pluralities. These types of considerations are vital for developing ethically justifiable decisions. It is by learning various approaches to medical ethics that the practitioner can navigate their field. The practice of medicine was, at least initially, considered to be an art. Although science has helped medicine develop therapies, diagnostic tests, and classification of diseases (for example), the importance of medical ethics demonstrates that the clinician still needs an ability to practice their art. The hypothetical questions listed above are unsurprisingly present in the papers included in this issue. There are also particular themes that emerge (again, regardless of geographical region), showing that there is a need for HCPs to be fully ethically equipped for their role in pediatric epileptology. A quick check of medicine legislation in many countries highlights the separation of licensing drugs for pediatric use and adult use. In this issue, Rose et al’s contribution on clinical trials and use of various epilepsy treatments in pediatric patients go some way to examining whether this is simply a regulatory issue or whether children may be thought of as “little adults”with regard to pharmacokinetics and pharmacodynamics, aski","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"12 1","pages":"057 - 058"},"PeriodicalIF":0.2,"publicationDate":"2020-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87558344","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}

{"title":"At What Point Should We Discontinue Treatment in Super-Refractory Status Epilepticus?","authors":"A. Datta","doi":"10.1055/s-0040-1714389","DOIUrl":"https://doi.org/10.1055/s-0040-1714389","url":null,"abstract":"Abstract This case report portrays the case of a child with super-refractory status epilepticus. The seizures were secondary to febrile infection-related epilepsy syndrome and the child required multiple anticonvulsants and eventually anesthetic infusions for several weeks. During the treatment, an ethical dilemma arose and was discussed by neurologists, intensivists, and family members.","PeriodicalId":42559,"journal":{"name":"Journal of Pediatric Epilepsy","volume":"103 1","pages":"100 - 101"},"PeriodicalIF":0.2,"publicationDate":"2020-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87909753","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}