Experiences and perspectives of peer support among young adults with epilepsy.

Young adulthood is a critical developmental period which having epilepsy tends to complicate, suggesting support could be useful. This study aimed to examine the experiences and perspectives of peer support among young adults with epilepsy (YAWE). An online survey was completed by 144 YAWE. Most YAWE reported not having access to peer support but perceived several potential benefits which could support their mental health including mutual understanding, fostering friendships and reducing loneliness, and promoting self-management and coping strategies. Reported barriers to accessing peer support included practical barriers such as travel and time constraints, emotional barriers (e.g., anxiety), and peers not feeling confident or skilled enough to support others. The need for epilepsy peer support groups specifically designed for young adults, university students, and individuals with co-occurring conditions such as autism and attention deficit hyperactivity disorder were also recognised as well as online delivery to address some of the identified barriers. Appropriate training for facilitators and group moderation were noted as important. Overall, these preliminary findings support the acceptability of peer support among YAWE, indicating peer support could be a worthy focus of policy and care pathway development. However, future research is needed to evaluate the effectiveness of peer support for epilepsy populations.

Psychiatric and cognitive characteristics of older adults admitted to a Video-EEG monitoring (VEM) unit.

OBJECTIVE: To compare the clinical, psychiatric, and cognitive characteristics of older with younger patients presenting to a video-EEG monitoring (VEM) unit. METHOD: This was a retrospective case-control study involving patients admitted for VEM over a two-year period (from April 2018 to April 2020) at two comprehensive epilepsy units. Patients were categorized into an older (≥60 years) and a younger (<60 years) group. Younger patients were individually matched to older adults to form a matched younger group. Diagnosis was determined by a consensus opinion of epileptologists, neurologists, and neuropsychiatrists. The main diagnostic categories were epilepsy, psychogenic nonepileptic seizures (PNES), and 'other' diagnosis (non-diagnostic and other nonepileptic diagnoses). Clinical psychiatric diagnoses were obtained from neuropsychiatric reports. Objective cognitive function was measured with the Neuropsychiatry Unit Cognitive Assessment Tool (NUCOG). Subjective cognitive function was assessed using the Quality of Life in Epilepsy Inventory-89 (QOLIE-89) cognitive subscales. RESULTS: Five-hundred and thirty three patients (71 older, 462 younger) aged 16-91 years were admitted to the VEM unit during the study period. There was a diagnosis of focal epilepsy in 55% of the older group and 48% of the younger group, generalized epilepsy in 3% of the older group and 10% of the younger group, and 'other' in 32% of the older group and 19% of the younger group. Ten percent (2 males and 5 females) of the older group were diagnosed with PNES compared to 22% of the younger group (p = 0.016). A depressive disorder was diagnosed in 34% of the older group and 24% of the younger group (p = 0.20). An anxiety disorder was diagnosed in 15% of the older group and 25% of the younger group (p = 0.15). Mild neurocognitive disorder was more common in the older group (34%) compared to the matched younger group (34% vs 3%, p < 0.001). The older group had lower mean NUCOG scores compared to the matched younger group (79.49 vs 87.73, p = <0.001). There was no evidence for a relationship between mean NUCOG score and overall subjective cognitive difficulties for the older group (r = 0.03, p = 0.83). Among older adults, those diagnosed with PNES had more experiences of childhood trauma. Measures of dissociation, depression, or general anxiety did not differ between PNES and non-PNES diagnoses in the older group. CONCLUSION: Psychiatric comorbidities are common among older adults admitted for VEM. The psychological impact of epilepsy and risk factors for PNES seen in younger patients are also applicable in the older group. The older group demonstrated more cognitive impairments than the younger group, although these were usually unrecognized by individuals. Older adults admitted to VEM will benefit from psychiatric and neuropsychological input to ensure a comprehensive care approach to evaluation and management.

Discontinuing antiepileptic drugs in long-standing idiopathic generalised epilepsy.

BACKGROUND: Once adults with long-standing idiopathic generalised epilepsy have achieved stable seizure remission, patients or physicians may attempt to discontinue their antiepileptic drug treatment. To date, risk of subsequent seizure relapse across the four idiopathic generalised epilepsy syndromes is largely unknown, and so are the clinical variables associated. METHODS: For this retrospective observational study, 256 adult outpatients with idiopathic generalised epilepsy were evaluated. Data were obtained from outpatient charts and, if possible, from additional telephone or mail interviews. RESULTS: In 84 patients (33%), antiepileptic medication was discontinued at least once. Median patient age at antiepileptic drug withdrawal was 33 years, and median duration of subsequent follow-up was 20 years. Seizures recurred in 46% of patients after a median latency of 11 months. Following multivariable analysis, seizure relapse was independently associated with short duration of seizure remission beforehand. If medication was withdrawn after < 5 years of seizure freedom, two-thirds of patients had a seizure relapse, while among those in remission for ≥ 5 years, only one-third relapsed. CONCLUSIONS: Discontinuation of antiepileptic drug treatment can be successful in every other adult with long-standing idiopathic generalised epilepsy. Short duration of prior seizure remission appears to be a relevant predictor of seizure recurrence.

Identifying the barriers to antiepileptic drug adherence among adults with epilepsy.

PURPOSE: To identify the barriers to antiepileptic drug (AED) adherence among adults with epilepsy (AWE). The impact of AED non-adherence on quality of life (QoL) was also examined. METHOD: Systematic design (SR) study. A search strategy was undertaken with no time limits, for articles published in English, in MEDLINE, CINANL, PsycINFO, EMBASE, Cochrane databases and grey literature sources. Eligibility criteria included participants with epilepsy over 18 years, who were prescribed AEDs. Adherence had to be defined and adherence assessment measurements identified. A screening process was undertaken to select eligible studies. Eight studies met the inclusion criteria and were included in a quantitative synthesis. Quality of evidence was conducted using the EBL critical appraisal checklist and assessing risk of bias within individual studies. RESULTS: Across the included studies a high prevalence of non-adherence was identified. AED non-adherence was associated with specific beliefs about medications, being depressed or anxious, poor medication self-administration management, uncontrolled recent seizures, frequent medication dosage times, poor physician-patient relationship and perceived social support. Additionally, AED non-adherence impacted negatively on QoL as a result of poor seizure control. CONCLUSION: Although included studies were of good quality, risk of biases reduced the generalisability of results. Findings suggested that comprehensive adherence assessments should routinely be performed. Recommendations for future research include the use of longitudinal research designs and a follow up SR to include the 16-18-year-old population.

The Effect of Human Potential Seminars on the Perceived Stigma of Adults with Epilepsy / 간호학회지

The purpose of this research was to identify the effect of human potential seminars on the perceived stigma of adults with epilepsy. the research employed a quasi experimental design and unequivalent control group pre-post design. The test was conducted on 15 adults with epilepsy attending one psychiatric out-patient clinic in Masan City, Korea. The stigma questionnaire was used as a pre-test to these patients. HPS was done ten times for five weeks from May 6, to July 26, 1996. The stigma questionnaire was again given, but this time as a post test. The control group of 14 adults with epilepsy were receiving medication at the same clinic. The human potential seminars were structured by Mcholland(1972) and translated by Lee, Hae Seung(1990). The stigma research tool was modified and revised to be appropriate to Korean culture. It consisted of 15 sentences. The internal consistency was 0.92 with Crombach's alpha. Research results are as follows. 1) To determine the homogeneity of the experimental and control groups. the pre-stigma results were used and democratic-sociologic characteristics, job characteristics and disease related variables were compare. There was no significant difference between the two groups. 2) To identify the relationship between stigma and patient characteristics a pre-test was done. The study used both Mann-whitney U-test and ANOVA test for statistical analysis. The variables related to stigma were the reason of unemployment and age at onset of epilepsy. 3) The test results of the effect of the human potential seminars on stigma in the patients with epilepsy, showed that stigma in the experimental group was lower than in the control group. the statistical method used to determine the difference between pre and post stigma results was the Wilcoxon signed rank test. The test results were statistically significant at the one percent level. 4) As a follow-up evaluation, ten more patients(66.7% of the total) were additionally tested. In order to investigate f the stigmas were different between the pre, post and follow-up, Repeated measure ANOVA was used. The test results showed that the stigma scores were statistically different between the three groups at the one percent level(F=10.076, d.f.=2, p=0.00).