Epilepsy & Behavior最新文献

Introduction

The COVID-19 pandemic has dramatically reshaped the landscape of healthcare delivery, prompting a surge in the adoption of telemedicine as a means to ensure continuity of care. During the pandemic, patients with epilepsy experienced difficulties accessing healthcare and obtaining necessary medications, with a substantial percentage facing obstacles in acquiring anti-seizure medication and reaching healthcare professionals. Disruptions in the supply and distribution of medication, due to COVID-19-related actions, further caused more problems for people with epilepsy and their caregivers like increasing seizure frequency. The pandemic has also accelerated the adoption of telemedicine, with evidence suggesting its potential benefits in various medical fields. In this systematic review and meta-analysis, we aim to investigate the challenges faced by patients with epilepsy during the COVID-19 pandemic, including healthcare access and medication acquisition, as well as evaluate changes in seizure frequency. Additionally, we will synthesize existing evidence on the use of telemedicine to address the healthcare needs of these patients, exploring its advantages and limitations.

Methods

This systematic review was prepared using PRISMA reporting guidelines. The databases searched were PubMed, Scopus, Web of Science, and Cochrane. Risk of Bias was assessed using Joanna Briggs Institute (JBI). Following rigorous application of eligibility criteria, relevant data, covering both telemedicine-related and health service access information, were methodically extracted and organized using Microsoft Excel spreadsheets. The analytical procedures were executed through the utilization of Comprehensive Meta-Analysis (CMA) software.

Results

A total of 70 articles included in this review. Regarding difficulties in accessing healthcare, 34% of PWE and 41% of caregivers experienced cancelled, changed or postponed appointments. Following issues with obtaining medicine, 13% of patients and 16% of caregivers had difficulties in medicine availability and 11% of patients and 10% of caregivers in medicine accessibility. A very high rate of 90% satisfaction with telemedicine was reported by PWE. 17.6% of PWE experienced an escalation, 9% a decrease and 67% no changes in seizure frequency.

Conclusion

This review and meta-analysis revealed that telemedicine and virtual communications have been helpful but not sufficient for meeting healthcare needs for PWE during the COVID-19 pandemic. Additionally, there was a significant increase in seizure frequency among PWE who had difficulty obtaining medicine and access to healthcare.

The Developmental and Epileptic Encephalopathies are a group of severe epilepsies which onset in early life and are characterized by recurrent, drug-resistant seizures and multiple comorbidities including intellectual disability, behavior and sleep problems, gait concerns, amongst others. Both convulsive and nonconvulsive status epilepticus are frequently seen, however the exact risk and type of status epilepticus depends on the underlying syndrome or etiology. The baseline degree of developmental impairment and EEG features characterized by background slowing and persistent, and at times, near-continuous high-amplitude epileptiform discharges can make a clearcut diagnosis of nonconvulsive status epilepticus, in a timely manner, very challenging. Furthermore, there is limited guidance on best management of nonconvulsive status epilepticus, and success of therapy is often suboptimal.

Objective

To determine the intracranial ictal onset and early spread patterns in pediatric patients with Temporal lobe epilepsy and its possible association with histopathology, temporal structure involved, mesial structural pathology, and possible implication in postsurgical outcome.

Methods

A descriptive, retrospective, cross-sectional study was carried out in a group of children from Children’s Wisconsin between 2016 and 2022.

Results

This study showed a strong association between ictal onset patterns and underlying histology (p < 0.05). Low-Frequency High Amplitude periodic spikes were seen only in patients with HS (20.6 %). A strong statistically significant association was found between different ictal onset patterns and the temporal lobe structure involved in the ictal onset (p < 0.001). Seizures with ictal onset consisting of Slow Potential Shift with superimposed Low Voltage Fast Activity arise from the Inferior Temporal Lobe or Middle Temporal Gyrus in a more significant proportion of seizures than those that originated from mesial temporal structures (Difference of proportion; p < 0.05). Low Voltage Fast Activity periodic spikes as an ictal pattern were seen in a patient with seizures arising outside the mesial temporal structure. The most frequent early spread pattern observed was Low Voltage Fast Activity (89.4 %); this pattern did not depend on the type of mesial structure pathology. Ictal onset patterns were associated with postsurgical outcomes (p < 0.001). The ictal onset pattern depends on the histopathology in the ictal onset zone and the temporal lobe structure involved in the ictal onset (p = 0.001).

Conclusions

Intracranial ictal onset patterns in TEMPORAL LOBE EPILEPSY depend on underlying histology and the temporal lobe structure involved in its onset.

Background

Dravet syndrome (DS) is a rare and severe form of epilepsy that begins in infancy, which is primarily caused by pathogenic variants in the SCN1A gene. DS is characterized by prolonged and frequent drug-resistant seizures, as well as developmental delays and behavioral problems. The identification of these comorbidities is based on clinical interview and relies on healthcare professionals (HCPs) experience.

Methods

We assembled a group of expert HCPs and caregivers to create a screening checklist for assessing DS-Associated Neuropsychiatric Comorbidities (DANC). The checklist includes questions related to cognitive and psychiatric domains, motor skills, and the impact of DS on families’ daily lives. We administered the checklist to 24 caregivers of DS patients from Belgium, France, and Spain. After piloting, we obtained feedback from expert HCPs and caregivers to refine the checklist.

Results

DS patients showed a wide array of neuropsychiatric symptoms related to DS. The most common cognitive domains reported were attention difficulties and multitasking problems (18/24 caregivers), and impulsivity (17/24), while the most common psychiatric symptoms were temper tantrums (14/24), mood swings (13/24) and autism spectrum disorder (12/24). Balance and coordination problem have been reported in almost all patients with a statement of only 4/23 with complete mobility. Most patients were dependent on others for self-care and eating, and presented sleeping disturbances. Caregivers reported high levels of stress in the family unit, both between siblings and parents. Results show that the main concerns of parents were the behavior and the cognition of the person with DS. The quantitative feedback results showed good-to-very good scores on usefulness, ease of completion, clarity and comprehensiveness of the checklist.

Conclusions

This pilot study suggests that the DANCE checklist could be a useful screening tool in daily practice for neuropsychiatric comorbidities facilitating their diagnosis and treatment, and empowering both caregivers and patients.

Objective

The clinical course of interictal psychosis (IIP) has not yet been investigated. We aimed to compared the psychopathology and time-relevant indices between chronic IIP (CIIP) and schizophrenia (SC)

Methods

In this comprehensive psychopathological study, patients with chronic psychosis with and without epilepsy (127 with CIIP and 187 with SC) were compared. Psychopathology was measured using the Brief Psychiatric Rating Scale (BPRS): total, negative symptoms (NSs), positive symptoms (PSs), and anxiety-depressive symptoms (ADSs). Time-relevant indices included age at the time of evaluation, age at the onset of psychosis, and duration of psychosis. The psychopathology of psychosis types and time-relevant indices were analyzed using Pearson’s correlation coefficient analysis of covariance.

Results

　Age at the time of evaluation was significantly correlated with NS, and ADS scores. Age-relevant trajectories significantly interacted with psychosis types. As age advanced, patients with SC exhibited increased scores, whereas patients with CIIP often exhibited decreased (or unchanged) scores. Age at onset of psychosis was significantly correlated with NS and ADS outcomes in patients with CIIP, whereas it was not correlated in patients with SC. There were significant interactions between age at onset and psychosis types. Patients with early-onset CIIP exhibited higher NS and lower ADS scores, whereas patients with SC exhibited no particular trajectory. The duration of psychosis significantly interacted with the psychosis types in the BPRS total, NSs and PSs. As duration increased, patients with CIIP exhibited no significant relationship, whereas patients with SC exhibited significantly higher psychotic scores.

Conclusion

Psychopathological courses differ between patients with CIIP and SC. Although patients with SC often exhibit deteriorations in psychotic symptoms, patients with CIIP exhibit no distinct deterioration. These findings can contribute psychiatric nosology, treatment strategies, and prediction outcomes.

Background

Transition is characterized by developing greater self-identity and growing independence, but adolescents dealing with chronic illnesses encounter health-related and situational changes during transition. Despite the many suggestions made in recent years, the shift from pediatric to adult care continues to pose difficulties for adolescents and young adults with epilepsy (AWE). The holistic perspective of AWE’s experiences and needs during transition is not as well understood.

Aim

To synthesize the qualitative evidence related to AWE’s experiences and needs transitioning from pediatric to adult hospital care.

Methods

This systematic review adhered to the rigorous Joanna Briggs methodology for qualitative evidence synthesis. A comprehensive search was conducted across multiple databases, including PubMed, CINAHL, Scopus, Embase, PsycINFO, and ProQuest Dissertations & Theses Global, from their inception to April 2024. The findings were critically appraised and aggregated using meta-synthesis.

Results

The search yielded a total of 3,985 studies, and twenty-one were included in the review. Two of the included studies were undertaken in a program where a transition clinic was established. The meta-synthesis reveals that the transition experience of AWE is more than a change from one clinic to another and is interwoven into a pattern of developmental, health-illness, situational, and organizational transition issues. Five synthesized findings were developed: 1) Feeling different from others and striving to address the impact of epilepsy in everyday life; 2) the transition from pediatric to adult care − a problematic intersection point; 3) the family’s role − support or parental overprotectiveness 4) seeking knowledge and being familiar with epilepsy supported by healthcare professionals and technologies, and 5) development of independence and responsibility through involvement and support from healthcare professionals and parents.

Conclusion

During the transition from pediatric to adult hospital care, AWEs encounter a loss of familiarity, increased responsibility, and feelings of not belonging. Therefore, it is essential to create an environment where they can thrive beyond the limitations of their illness. Understanding, acceptance, and inclusivity should characterize this environment to support AWEs in facilitating the development of responsibility, independence, and confidence as they navigate transitions.

Background

Understanding illness representations is considered important for improving health outcomes, yet how people with functional seizures reflect on the possible psychological function of their seizures has not been studied.

Methods

A semi-structured interview comprising open and closed questions was administered to 99 participants with a documented diagnosis of functional seizures. One item, ‘What do you think your functional seizure symptoms are telling you?” sought to explore how individuals reflect on the possible function of their seizures. Qualitative analysis using NVivo comprised thematic content analysis of responses to the question, and pattern analysis, to determine association with diagnosis acceptance, and openness to a possible psychological aetiology.

Results

Most patients (88 %) readily interpreted their seizures in response to this question. We identified one major theme, with the majority of participants interpreting seizure symptoms as an enforced hiatus. Two minor themes were identified: personal growth and contempt. Subthemes were identified within both the enforced hiatus (stop, slow down, relax) and personal growth (self-care, self-development, acceptance) themes. Individuals who did not accept the diagnosis of functional seizures referenced seizures with contempt towards the self or answered, ‘don’t know’. Respondents who did not know also tended to reject a psychological basis for their seizures in contrast to those who discussed themes of enforced hiatus, personal growth, and contempt.

Conclusions

Responses provide valuable insight into how individuals reflect on their condition in a non-acute setting. Themes can serve as a foundation for future therapeutic discussions and patient-centred communication strategies to build a mutual understanding of the potential function of physical symptoms regardless of whether a psychological basis for them is accepted or not.

What is already known on this topic: Outcomes for functional seizures are generally poor and often attributed to patients rejecting psychiatric care or not accepting the diagnosis.

What this study adds: This study is the first to explore patient conceptualisations of the possible function of their functional seizures as a therapeutic tool for understanding the condition.

How this study might affect research, practice, or policy: Findings may provide a basis for improved clinician-patient relationships, treatment engagement, and more targeted interventions for people with functional seizures.

Introduction

Lennox-Gastaut syndrome (LGS) and Dravet syndrome (DS) are rare, childhood-onset conditions associated with severe, treatment-resistant epilepsy and developmental issues, including motor and cognitive impairment. Tuberous sclerosis complex (TSC) is a rare genetic disease commonly associated with epilepsy and other neuropsychiatric disorders. This cross-sectional, interview-based study examined the qualitative impact of caring for patients with LGS, DS, and TSC-associated epilepsy on caregivers in Japan, from the perspective of both caregivers and physicians.

Methods

The survey included a pre-interview worksheet to describe caregivers’ emotional journeys, followed by a ≤ 60-minute one-on-one interview. Eligible participants were Japanese caregivers of patients with LGS, DS, or TSC treated for epilepsy symptoms, and Japan-residing pediatricians or neurologists treating ≥ 3 patients with LGS, DS, and/or TSC. Interview question responses were subjected to content analysis to identify the most common response tendencies and themes.

Results

Twenty-six caregivers responded (mean [standard deviation (SD)] age, 45.9 [9.5] years; age range 29–68; 92 % female), caring for patients with LGS (n = 5), DS (n = 10), and TSC (n = 11); patient mean (SD) age, 13.6 (10.0) years; age range 2–44; 27 % adults; 50 % female. Nineteen physicians, treating patients with LGS (n = 9), DS (n = 7), and TSC (n = 10), participated. Caregivers and physicians generally aligned on the factors affecting caregivers’ emotional states / quality of life (QoL). The most frequently reported caregiver emotions at the time of diagnosis were shock and discouragement, anxiety for the future, and relief at receiving a diagnosis. Negative emotions throughout disease progression up until the time of survey were mainly caused by worsening of seizures, burden of constant caregiving / lack of free time, and patient’s developmental issues. Positive emotions were linked to effective treatment / reduced seizures; more free time owing to the use of facilities, services, or other caregiving support; and developmental progress. Physicians acknowledged that caregivers required consultation services to support their emotional needs. In terms of unmet needs, caregiver and physician responses were aligned on the insufficient availability of services/facilities, the lack of effective treatments, and the uncertainties of adult patient care.

Conclusions

Caregivers of patients with LGS, DS, or TSC-associated epilepsy in Japan reported a high degree of emotional burden related to frequent seizures, developmental issues, and constant caregiving. The burden of suboptimal treatment effectiveness, limited access to support services, and uncertainties in long-term care emphasize important unmet treatment needs.

Background

Parents of children with epilepsy (CWE) are at increased risk of mental health difficulties including anxiety and depression, as well as sleep difficulties. From both the child’s and parent’s perspectives, health-related quality of life has been shown to be strongly related to parental mental health. However, there is no literature on parental sleep as a predictor of child health-related quality of life. The role of parental variables has been assessed in relation to epilepsy-specific variables (e.g., seizure severity, anti-seizure medications) and how these relate to health-related quality of life, but prior studies have failed to consider the role of co-occurring conditions which are prevalent in CWE. The current study aims to assess how common anxiety symptoms, depression symptoms and sleep problems are in parents of CWE; and to determine the impact these parental variables as well as child co-occurring conditions have on health-related quality of life in CWE.

Methods

33 CWE aged 4–14 years old were recruited from two hospitals and parents were asked to complete a series of questionnaires assessing both child and parental variables.

Results

It was found that 33.3 % and 12.0 % of parents of CWE experienced clinically significant anxiety and depression symptoms respectively. In addition 67.9 % of parents presented with significant sleep problems. In initial analysis, parental anxiety symptoms, depression symptoms and sleep problems were all significantly predictive of child health-related quality of life. However when co-occurring child sleep problems and neurodevelopmental characteristics were included, parental variables were no longer significantly predictive of child health-related quality of life.

Conclusion

These results suggest that child co-occurrences mediate the relationship between parental variables and child health-related quality of life. The current data highlight the need for a systemic approach to epilepsy management and suggest that support for co-occurrences could benefit health-related quality of life for children and their parents.

Aims

This study aimed to explore the interactions between healthcare providers and parents of children or adolescents with epilepsy. A qualitative systematic review based on the theory-generating meta-synthesis research approach proposed by Finfgeld-Connett (2018) was applied. Materials and Methods: We searched for empirical qualitative studies in five electronic databases (PubMed, Embase, CINAHL, Cochrane Library, and Web of Science), from January 1, 2003 to February 9, 2023. Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines were used to guide the selection process, and two researchers independently assessed the methodological quality of the articles using the Critical Appraisal Skills Programme Qualitative Studies Checklist. Results: Of the 4,768 studies initially imported for screening, 27 studies were reviewed and synthesized. Only one qualitative study directly focused on the interactions between parents and healthcare providers, but various studies mentioning such interaction as themes or sub-themes of other phenomena allowed us to draw out common attributes. Defining attribute, “journey through the three stages of interaction,” were derived as follows: Stage 1: trust vs. mistrust; Stage 2: autonomy vs. doubt; Stage 3: adaptation. The antecedents included encounters with healthcare providers and parent empowerment. A patient-centered approach was found to be the consequence.

Conclusion

It is important for parents of children or adolescents with epilepsy to empower themselves and increase their interactions. Considering the stage of interaction, healthcare providers and researchers should explore strategies to promote effective communication. Further research is required to develop strategies aimed at supporting parents and healthcare providers to achieve the tasks at each stage and maintain Stage 3, “adaptation.”