Treatment issues for children with epilepsy transitioning to adult care

This is the third of three papers that summarize the second symposium on Transition in Epilepsies held in Paris in June 2016. This paper focuses on treatment issues that arise during the course of childhood epilepsy and make the process of transition to adult care more complicated. Some AEDs used during childhood, such as stiripentol, vigabatrin, and cannabidiol, are unfamiliar to adult epilepsy specialists. In addition, new drugs are being developed for treatment of specific childhood onset epilepsy syndromes and have no indication yet for adults. The ketogenic diet may be effective during childhood but is difficult to continue in adult care. Regional adult epilepsy diet clinics could be helpful. Polytherapy is common for patients transitioning to adult care. Although these complex AED regimes are difficult, they are often possible to simplify. AEDs used in childhood may need to be reconsidered in adulthood. Rescue medications to stop prolonged seizures and clusters of seizures are in wide home use in children and can be continued in adulthood.Adherence/compliance is notoriously difficult for adolescents, but there are simple clinical approaches that should be helpful. Mental health issues including depression and anxiety are not always diagnosed and treated in children and young adults even though effective treatments are available. Attention deficit hyperactivity disorder and aggressive behavior disorders may interfere with transition and successful adulthood but these can be treated. For the majority, the adult social outcome of children with epilepsy is unsatisfactory with few proven interventions.The interface between pediatric and adult care for children with epilepsy is becoming increasingly complicated with a need for more comprehensive transition programs and adult epileptologists who are knowledgeable about special treatments that benefit this group of patients.     

Transition to adult medical care for adolescents with epilepsy

IntroductionDuring transition to adult medical care, the adolescent with epilepsy is especially prone to emotional, mental, physical, and social developmental difficulties, leading to stigma and poor psychosocial and socioeconomic outcome in the long term.ObjectivesThe aim of this review is twofold: to describe the psychosocial and medical transition from adolescence to adulthood and to evaluate the most effective model for transitional services in adolescents with epilepsy.MethodsWe searched PubMed for quantitative and qualitative data about transition from adolescence to adulthood in patients with epilepsy.ResultsA total of 49 articles were retrieved. We reviewed personal, psychosocial, and medical issues during transition and their long-term individual and societal consequences. Identifying risk factors for poor transition can lead to appropriate interventions for patients and their family. Although the concept of multidisciplinary transition care for adolescents with epilepsy is widely recognized, only a few transition clinics have been established. There is lack of evidence for their quality and cost-effectiveness.ConclusionIn addition to medical problems, more attention should be paid to the risk of psychosocial problems during transition from pediatric to adult care. The implementation of transition care for adolescents with epilepsy is considered beneficial; however, its effectiveness should be further investigated.     

Epilepsy: Transition from pediatric to adult care. Recommendations of the Ontario epilepsy implementation task force

The transition from a pediatric to adult health care system is challenging for many youths with epilepsy and their families. Recently, the Ministry of Health and Long‐Term Care of the Province of Ontario, Canada, created a transition working group (TWG) to develop recommendations for the transition process for patients with epilepsy in the Province of Ontario. Herein we present an executive summary of this work. The TWG was composed of a multidisciplinary group of pediatric and adult epileptologists, psychiatrists, and family doctors from academia and from the community; neurologists from the community; nurses and social workers from pediatric and adult epilepsy programs; adolescent medicine physician specialists; a team of physicians, nurses, and social workers dedicated to patients with complex care needs; a lawyer; an occupational therapist; representatives from community epilepsy agencies; patients with epilepsy; parents of patients with epilepsy and severe intellectual disability; and project managers. Three main areas were addressed: (1) Diagnosis and Management of Seizures; 2) Mental Health and Psychosocial Needs; and 3) Financial, Community, and Legal Supports. Although there are no systematic studies on the outcomes of transition programs, the impressions of the TWG are as follows. Teenagers at risk of poor transition should be identified early. The care coordination between pediatric and adult neurologists and other specialists should begin before the actual transfer. The transition period is the ideal time to rethink the diagnosis and repeat diagnostic testing where indicated (particularly genetic testing, which now can uncover more etiologies than when patients were initially evaluated many years ago). Some screening tests should be repeated after the move to the adult system. The seven steps proposed herein may facilitate transition, thereby promoting uninterrupted and adequate care for youth with epilepsy leaving the pediatric system.     

Child abandonment: Historical,sociological and psychological perspectives

Even though the act of physical child abandonment is a relatively common occurrence, it remains an understudied social phenomena. It has been an act of parents since earliest times, but even in our modern enlightened society, children are still ejected from their homes and physically abandoned in frightening numbers. Even though attention has been directed toward the understanding and combating of the numerous variations of child abuse and neglect, the problem of physical abandonment is rarely discussed until sensationalistic news reports emerge to remind us that children are still left in parks or on street corners. To further understand this phenomena of child abandonment, this paper reviews the literature and examines the process from historical, sociological and psychological perspectives. This report looks to stimulate further interest in physical child abandonment and its precursor, psychological child rejection, as forms of child abuse and neglect which can and should be combated by proper psychiatric intervention.     

Behavioral health in young adults with epilepsy: Implications for transition of care

AimNeurodevelopmental and behavioral health disorders commonly occur with epilepsy, yet risk for young adults is unknown. The aim of this study was to determine the distribution and risk characteristics of neurodevelopmental and behavior health comorbidities among young adults with epilepsy compared with those among young adults with migraine and healthy controls.MethodA case-control study examining hospital admission, outpatient, and emergency department (ED) visits for young adults with an ICD-9-CM diagnosis of epilepsy, migraine, or lower extremity fracture (LEF) was conducted. The association of epilepsy, migraine, or LEF with comorbidities was evaluated with univariate and multivariate polytomous logistic regression.ResultsFrom 2000 to 2013, 29,139 young adults ages 19 to 25 years were seen in hospitals and EDs for epilepsy (5666), migraine (17,507), or LEF (5966). Young adults with epilepsy had higher proportions of behavioral health comorbidities (51.8%) compared with controls with migraine (37.6%) or LEF (21.6%). In young adults with epilepsy compared with migraine, the increased risk of having any behavioral health comorbidity was 76%, and neurodevelopmental comorbidity was 297%. After adjustment, young adults with epilepsy showed significantly higher odds of each behavioral health comorbidity compared with controls with migraine and LEF.InterpretationYoung adults with epilepsy are particularly susceptible to behavioral health and neurodevelopmental disorders. Results are discussed within the context of transition to adult care.     

Rufinamide for refractory epilepsy in a pediatric and young adult population

This chart review investigated the efficacy and safety of rufinamide in 45 children and young adults who experienced a broad spectrum of partial and generalized seizure/epilepsy types which have been refractory to therapy. Of these patients, 19 (46%) achieved a >50% decrease in seizure frequency on rufinamide, and 7 patients achieved a >75% decrease in seizure frequency. While 17 (37.8%) patients stopped their trial of rufinamide prior to the end of the review period, only 2 (4.4%) were due to adverse effects. Although additional research must be done, this data shows promise that rufinamide is a safe and efficacious adjunct for cases of refractory epilepsy.     

Prioritizing core components of successful transitions from child to adult mental health care: a national Delphi survey with youth,caregivers, and health professionals

Youth accessing mental health care often experience a disruption in care as they attempt to transition between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS). Few studies have evaluated interventions seeking to improve the experience and outcomes of CAMHS–AMHS transitions, in part due to lack of consensus on what constitutes best practices in intervention success. As such, the aim of this study was to engage patients, caregivers, and clinicians to prioritize core components of successful CAMHS–AMHS transitions which can be used in the design or evaluation of transition interventions. As such, a Delphi study was conducted to determine core components of successful CAMHS–AMHS transitions. Guided by the principles of patient-oriented research, three balanced expert panels consisting of youth, caregivers, and clinicians ranked and provided feedback on the importance and feasibility of core components of CAMHS-AMHS transitions. Components endorsed as feasible or important with ≥ 70% agreement from any panel moved to the next round. As a result, a list of 26 core components of CAMHS–AMHS transitions has been refined which can be used in the design, implementation, or evaluation of interventions intended to improve transition experiences and outcomes for youth in mental health care. Youth and families were engaged in an expert advisory role throughout the research process, contributing their important perspectives to the design and implementation of this study, as well as interpretation of the findings.

     

Women with epilepsy: hormonal issues from menarche through menopause

Epilepsy is a multilayered disorder complicated by numerous comorbid conditions and hormonal changes. More than 1.5 million girls and women with epilepsy face side effects that are compounded at different ages by menstruation, fertility, pregnancy, fetal health, bone health, and other health issues. Changes in hormonal balance during maturation, from menarche through menopause, affect seizure thresholds and antiepileptic drugs, and vice versa. This overview provides physicians with a background on the multiple issues relevant to women of all ages in the reproductive years, including those planning to conceive and those who are pregnant, and beyond the childbearing years.     

心理干预对癫患者焦虑抑郁情绪的影响

目的:探讨心理干预对癫患者焦虑抑郁情绪的影响。方法:对163例成人癫患者在抗癫治疗的同时实施为期3个月的心理干预;采用中文版Zung焦虑自评量表(SAS)及抑郁自评量表(SDS)分别于干预前、干预后1个月和3个月进行评定。结果:163例癫患者实施心理干预后焦虑和抑郁情绪改善显著,并随干预时间延长而显著下降。与干预前比较,干预1周,SAS及SDS评分与干预前差异无统计学意义(P=0.469、0.272);干预1个月和3个月,SAS及SDS评分与干预前比较差异有显著统计学意义(F=15.196、16.207,P均<0.001)。结论:癫患者焦虑抑郁情绪明显;心理干预能够显著改善患者焦虑抑郁情绪;干预时间越长,效果越好。     

Outcome of childhood-onset epilepsy from adolescence to adulthood: Transition issues

This is the second of three papers that summarize the second symposium on Transition in Epilepsies held in Paris in June 2016. This paper addresses the outcome for some particularly challenging childhood-onset epileptic disorders with the goal of recommending the best approach to transition. We have grouped these disorders in five categories with a few examples for each. The first group includes disorders presenting in childhood that may have late- or adult-onset epilepsy (metabolic and mitochondrial disorders). The second group includes disorders with changing problems in adulthood (tuberous sclerosis complex, Rett syndrome, Dravet syndrome, and autism). A third group includes epilepsies that change with age (Childhood Absence Epilepsy, Juvenile Myoclonic Epilepsy, West Syndrome, and Lennox-Gastaut syndrome). A fourth group consists of epilepsies that vary in symptoms and severity depending on the age of onset (autoimmune encephalitis, Rasmussen's syndrome). A fifth group has epilepsy from structural causes that are less likely to evolve in adulthood. Finally we have included a discussion about the risk of later adulthood cerebrovascular disease and dementia following childhood-onset epilepsy. A detailed knowledge of each of these disorders should assist the process of transition to be certain that attention is paid to the most important age-related symptoms and concerns.     

The relationship of coping behaviors to depressive symptoms in youth with epilepsy: an examination of caregiver and youth proxy report

Study aims were to explore evaluation and comparison of measures of coping and the relationship of epilepsy-specific coping responses to depressive symptoms in youth with epilepsy (YWE). Seventy-six YWE ages 9-17 completed the Children's Depression Inventory (CDI) and the Kidcope. Sixty-six caregivers reported on youth coping (CHIC) and seizure activity. Epilepsy variables were abstracted from electronic medical records. There were no significant correlations between the CHIC coping factors and individual Kidcope scores. Only one CHIC factor, "competence/optimism," was significantly negatively correlated with CDI. Regression analyses revealed a significant association between CDI and negative coping (Kidcope) after adjusting for sex, number of AEDs, and seizure severity. On the CDI, 27% of YWE endorsed suicidal ideation. Findings provide preliminary support for use of the Kidcope as a measure of negative epilepsy-specific coping. These results imply that youth coping and suicidal ideation are important to assess in relation to depressive symptoms and that youth report of these symptoms is particularly salient to the evaluation of youth functioning.     

Comparing psychological and sociological approaches to identity: identity status,identity capital,and the individualization process

Psychologists have been studying identity processes at the intrapsychic level that resemble what sociologists have noted at the macro-societal level. Specifically, using the identity capital model introduced in previous issues of this journal (C?té, Journal of Adolescence, 19, 419-430; 20, 421-437), we explore a link between the psychologically oriented identity status paradigm, and the sociologically oriented individualization theory. The primary link between these two disciplinary approaches appears to be that the individualization process can be operationalized in terms of agency in identity formation. The relationship between agency and identity formation has been recognized by identity status researchers for some time, but primarily in terminology referring to the intrapsychic level; hence, in some respects, identity status researchers anticipated individualization theory. This link was empirically investigated in three studies of ethnically diverse samples. It was concluded, with a high degree of replication, that the identity statuses representing identity confusion (Diffusion) and identity synthesis (Achievement) appear to represent forms of default and developmental individualization, respectively. This comparison of similar elements between psychological and sociological perspectives may yield a richer understanding of identity formation processes, and help to pave the way for future interdisciplinary research..     

Social factors, mental illness, and psychiatric care: recent advances from a sociological perspective

The author reviews advances in the sociological perspective on mental health over the past four years. He examines research on such topics as community acceptance of the mentally ill, arrest rates among former psychiatric inpatients, and the effect of social factors on the type of mental health treatment received. Other research areas surveyed include the influence of social factors on service utilization and on life stress and psychological distress, sex differences in psychological problems, and the relationship between organization of service delivery systems and patient outcome.     

The permanence of family ties: implications for youth transitioning from foster care

Research on the experiences of youth leaving foster care as they enter adulthood has noted that they often reconnect, and sometimes live with, members of their family of origin. This is often thought to be a curious finding because at some earlier point, the families were deemed unsafe, requiring removal of the child to foster care. Although this finding has been consistent, it has not been the central focus of a research study and, therefore, its implications have been largely unexamined. In this article, the authors review what is known about the extent to which young adults reunite with their families after they leave foster care. To provide guidance in thinking further about former foster youth reuniting with their families, the authors also examine research and theoretical literature on family development and family transition. Implications for research, policy, and practice are identified.     

Epilepsy and women's health issues: unmet needs--survey results from women with epilepsy

The impact of epilepsy on women involves unique issues related to hormone effects on seizure control, seizure and drug effects on reproductive health, birth control options, and bone mineral density. Patient-physician communication on these critical issues may not be adequate. This survey evaluated women's perceptions and misconceptions of the issues they face with the diagnosis of epilepsy and the use of antiepileptic drugs (AEDs). The goals of the survey were to identify the level of current patient-physician dialogue on these issues and to determine whether women perceived a need for more information from their physicians. Across the responders, the greatest concerns related to AED therapy were weight gain (63%) and bone health (64%). Among women less than 35 years old, 69% were concerned about pregnancy. Women with epilepsy who access online health information are not adequately educated by their physicians about the impact of epilepsy and AED therapy.