Medication self-management in predominantly African American and Caribbean American people with epilepsy: The role of medication beliefs and epilepsy knowledge.

INTRODUCTION: Suboptimal medication adherence is common in people with epilepsy (PWE) and disproportionally prevalent among racially/ethnically diverse patients. Understanding reasons and risks of suboptimal adherence is critical to developing interventions that reduce negative health outcomes. This cross-sectional study characterized common barriers to medication self-management, prevalence of negative medication beliefs, and gaps in epilepsy knowledge among predominantly African American and Caribbean American PWE and examined their interrelationships. MATERIALS AND METHODS: Sixty-three PWE (Age = 42.1 ± 13.2; 60% female; 79% Black; 19% Hispanic/Latino) completed validated self-report questionnaires about medication self-management, medication beliefs, and epilepsy knowledge. Correlations and t-tests examined interrelationships. RESULTS: Four barriers to medication self-management were common, including not taking antiseizure medications at the same time every day, forgetting doses, not planning refills before running out, and spreading out doses when running low. More than half the sample believed medications were overused by prescribers. Nearly one-third believed medications were harmful, and nearly a quarter believed their antiseizure medications were minimally necessary with almost half reporting elevated concerns about negative consequences of antiseizure medications. Poorer medication self-management was associated with stronger beliefs that medications in general are harmful/overused by prescribers. Individuals who were "accepting" of their antiseizure medications (i.e., high perceived necessity, low concerns) were less likely to spread out time between doses when running low compared to non-accepting counterparts. Knowledge gaps related to the cause of seizures/epilepsy, chronicity of epilepsy treatment, and seizure semiology/diagnosis were common. Nevertheless, epilepsy knowledge was unrelated to medication self-management and medication beliefs. CONCLUSIONS: In these PWE, the most prevalent reasons for suboptimal medication self-management were behaviorally mediated and potentially modifiable. Negative medication beliefs and misconceptions about epilepsy and its treatment were common. Results further suggest that interventions addressing negative medication beliefs will be more effective than knowledge-based psychoeducation alone to improve medication self-management in this patient population.

Anxiety disorders in predominantly African American and Caribbean American adults with intractable epilepsy: The role of perceived epilepsy stigma.

INTRODUCTION: Anxiety disproportionately affects people with epilepsy (PWE) and leads to poor outcomes. Yet, risk factors are not well understood especially among underserved groups. This cross-sectional study aimed to identify epilepsy-specific predictors of anxiety disorders in predominantly African American and Caribbean American PWE. MATERIALS AND METHODS: The prevalence of anxiety disorders was established via diagnostic interview (Mini-International Neuropsychiatric Interview (MINI)). We identified the extent to which aspects of seizure burden (seizure frequency, seizure severity, convulsive vs. nonconvulsive seizures), seizure worry, and perceived epilepsy stigma were associated with anxiety disorder diagnosis. Finally, logistic regression assessed the overall and independent contributions of significant risk factors. RESULTS: There were 60 participants (62% women, 52% African American, 27% Caribbean American, 20% Hispanic/Latino) with an average of 2 seizures per month. Nearly half of the sample (43%) had ≥1 anxiety disorder, with 62% of affected individuals qualifying for agoraphobia. Those with anxiety disorders tended to have convulsive seizures (p = 0.037) and endorsed greater seizure worry (p = 0.012), more general symptoms of anxiety (p = 0.005), and worse perceived epilepsy stigma (p = 0.003). Logistic regression accounted for 28% to 37.6% of the variance in anxiety disorder diagnostic status and correctly classified 73% of cases; however, only perceived epilepsy stigma made a unique contribution. CONCLUSIONS: Anxiety disorders were prevalent in these predominantly African American and Caribbean American PWE. Epilepsy-specific risk factors included convulsive seizures, seizure worry, and perceived epilepsy stigma. Interventions aimed at treating anxiety disorders in diverse PWE may especially benefit from targeting stigma beliefs.

Perceived epilepsy stigma mediates relationships between personality and social well-being in a diverse epilepsy population.

INTRODUCTION: Perceived epilepsy stigma and reduced social well-being are prevalent sources of distress in people with epilepsy (PWE). Yet, research on patient-level correlates of these difficulties is lacking, especially among underserved groups. MATERIALS AND METHODS: Racially/ethnically diverse adults with intractable seizures (N=60, 62% female; 79% Black, 20% Hispanic/Latino, 8% White) completed validated measures of personality (NEO Five Factor Inventory, NEO-FFI-3), perceived epilepsy stigma (Epilepsy Stigma Scale, ESS), and quality of life (Quality of Life Inventory in Epilepsy, QOLIE-89). Controlling for covariates, ordinary least-squares (OLS) regression evaluated the total, direct, and indirect effects of NEO-FFI-3 neuroticism and extraversion scores on epilepsy-related social well-being (i.e., combination of QOLIE-89 social isolation and work/driving/social function subscales, α=0.87), mediated through perceived stigma. RESULTS: In separate models, higher levels of neuroticism (N) and lower levels of extraversion (E) were significantly and independently associated with greater perceived stigma (N path a=0.71, p=0.005; E path a=-1.10, p<0.005). Stigma, in turn, was significantly and independently associated with poorer social well-being (N path b=0.23, p<0.001; E path b=-0.23, p<0.001). Bias-corrected bootstrap confidence intervals (CIs) showed that neuroticism and extraversion were indirectly associated with social well-being through their respective associations with perceived stigma (N path ab=-0.16, 95% CIs [-0.347, -0.044]; E path ab=0.25, 95% CIs [0.076, 0.493]). CONCLUSION: Higher neuroticism and lower extraversion covaried with stigma beliefs, and these may be markers of poor social outcomes in PWE. Mediation models suggest that targeting epilepsy stigma beliefs may be a particularly useful component to incorporate when developing interventions aimed at promoting social well-being in diverse PWE.

Assessment of medication management capacity in a predominantly African American and Caribbean American sample of adults with intractable epilepsy.

INTRODUCTION: Suboptimal or partial adherence to antiepileptic drugs (AEDs) is an avoidable cause of seizures and deleterious outcomes in epilepsy. As self-rated adherence may be unreliable, suboptimal adherence may go undetected. This study assessed generalizability of a performance-based measure of medication management to patients with intractable epilepsy. MATERIALS AND METHODS: Participants were 50 adults (age = 42 ±â€¯14 years, 60% female, 82% Black, 20% Hispanic/Latino) with ≥2 seizures in the preceding 6 months. Antiepileptic drug adherence was electronically monitored for one month via Medication Event Monitoring Systems (MEMS) and self-rated (1 = very poor to 6 = excellent). The Medication Management Ability Assessment (MMAA) was administered at follow-up and scored by raters blind to adherence results. Spearman correlations and Poisson regressions assessed their associations. RESULTS: On average, participants self-reported good-to-very good adherence. According to MEMS, participants took AEDs as prescribed 73% of the time; most participants (58%) missed ≥3 doses. The MMAA demonstrated strong internal consistency (Kuder-Richardson 20 = 0.81) and was associated with MEMS: percentage of days doses were taken correctly (rs = 0.29, p = 0.04) and frequency of missed doses (rs = -0.31, p = 0.03). The MMAA was not associated with self-rated adherence. Poisson regressions showed that self-ratings and MMAA performance accounted for unique variance in frequency of missed AED doses. CONCLUSIONS: These findings provide evidence of the MMAA's criterion validity as a measure of capacity to manage AEDs. It may prove useful in cases where suboptimal adherence is suspected but unreported by patients. Its lack of significant association with self-rated adherence is consistent with prior reports; however, future studies should replicate these findings with larger samples.

Effects of adjunctive lacosamide on mood and quality of life in patients with epilepsy.

We examined the effects of adjunctive lacosamide (LCM) on mood and quality of life (QOL) in adult patients with partial-onset seizures in a prospective, controlled, single-blind study. Patients in whom LCM was added to their AED regimen for clinical indications comprised the LCM group (n=18), while the control group (n=32) comprised patients on ≥2 AEDs with anticipated stable dosing for the duration of the study. Profile of Mood States (POMS) and QOLIE-89 were used to assess mood and QOL at enrollment and 12-16weeks later. Adherence to LCM was measured electronically with the Medication Event Monitoring System (MEMS) and using a self-report measure. There were no significant between-group differences in age, AED load, side-effects (A-B Neurotoxicity Scale), MoCA mental status, or seizure-related factors. LCM adherence (measured by MEMS) was 70.7%. There was a significant decrease in negative mood states in the LCM group (estimated marginal mean at baseline=49.4, at follow-up=29.7; p=0.02), after controlling for seizure freedom. Based on previously reported benchmarks, clinically significant change on the POMS occurred in 7 (38%) LCM patients. The effect of LCM on the overall QOL was not significant (p=0.078). Correlation between POMS Total Mood Distress and Emotional-Wellbeing on the QOLIE-89 was significant (r=-0.783; p=0.01). These results suggest that LCM may have a favorable impact on mood.

Prevalence of epileptiform discharges in healthy 11- and 12-year-old children.

We sought to determine the prevalence of interictal epileptiform discharges (IEDs) in healthy 11- and 12-year-old children. Sixth grade students with no history of seizure, or neurologic or psychiatric disease, were enrolled in a longitudinal physical activity intervention study. Per study protocol, each student had two EEG recordings approximately 6months apart. Epileptiform discharges were present in 4 (2.9%) of 140 students: centrotemporal in three and generalized in one. In three children, the discharges were still present six months later. None of the children had developed seizures a minimum of one year after the second EEG. These results are consistent with those of two landmark European studies performed nearly a half century ago, before the modern era of digital EEG. Healthy 11- and 12-year-old children with no history of seizure may have centrotemporal or generalized epileptiform discharges on EEG, which can persist for at least 6months. Based on both our results and those of the two prior European studies, such discharges, if found incidentally in otherwise healthy children in this age group, should not prompt further evaluation or treatment.

Normalization in human somatosensory cortex.

Functional magnetic resonance imaging (fMRI) was used to measure activity in human somatosensory cortex and to test for cross-digit suppression. Subjects received stimulation (vibration of varying amplitudes) to the right thumb (target) with or without concurrent stimulation of the right middle finger (mask). Subjects were less sensitive to target stimulation (psychophysical detection thresholds were higher) when target and mask digits were stimulated concurrently compared with when the target was stimulated in isolation. fMRI voxels in a region of the left postcentral gyrus each responded when either digit was stimulated. A regression model (called a forward model) was used to separate the fMRI measurements from these voxels into two hypothetical channels, each of which responded selectively to only one of the two digits. For the channel tuned to the target digit, responses in the left postcentral gyrus increased with target stimulus amplitude but were suppressed by concurrent stimulation to the mask digit, evident as a shift in the gain of the response functions. For the channel tuned to the mask digit, a constant baseline response was evoked for all target amplitudes when the mask was absent and responses decreased with increasing target amplitude when the mask was concurrently presented. A computational model based on divisive normalization provided a good fit to the measurements for both mask-absent and target + mask stimulation. We conclude that the normalization model can explain cross-digit suppression in human somatosensory cortex, supporting the hypothesis that normalization is a canonical neural computation.

Diagnostic accuracy of microEEG: a miniature, wireless EEG device.

Measuring the diagnostic accuracy (DA) of an EEG device is unconventional and complicated by imperfect interrater reliability. We sought to compare the DA of a miniature, wireless, battery-powered EEG device ("microEEG") to a reference EEG machine in emergency department (ED) patients with altered mental status (AMS). Two hundred twenty-five ED patients with AMS underwent 3 EEGs. Two EEGs, EEG1 (Nicolet Monitor, "reference") and EEG2 (microEEG) were recorded simultaneously with EEG cup electrodes using a signal splitter. The remaining study, EEG3, was recorded with microEEG using an electrode cap immediately before or after EEG1/EEG2. The official EEG1 interpretation was considered the gold standard (EEG1-GS). EEG1, 2, and 3 were de-identified and blindly interpreted by two independent readers. A generalized mixed linear model was used to estimate the sensitivity and specificity of these interpretations relative to EEG1-GS and to compute a diagnostic odds ratio (DOR). Seventy-nine percent of EEG1-GS were abnormal. Neither the DOR nor the κf representing interrater reliabilities differed significantly between EEG1, EEG2, and EEG3. The mean setup time was 27 min for EEG1/EEG2 and 12 min for EEG3. The mean electrode impedance of EEG3 recordings was 12.6 kΩ (SD: 31.9 kΩ). The diagnostic accuracy of microEEG was comparable to that of the reference system and was not reduced when the EEG electrodes had high and unbalanced impedances. A common practice with many scientific instruments, measurement of EEG device DA provides an independent and quantitative assessment of device performance.

EEG interpretation reliability and interpreter confidence: a large single-center study.

The intrarater and interrater reliability (I&IR) of EEG interpretation has significant implications for the value of EEG as a diagnostic tool. We measured both the intrarater reliability and the interrater reliability of EEG interpretation based on the interpretation of complete EEGs into standard diagnostic categories and rater confidence in their interpretations and investigated sources of variance in EEG interpretations. During two distinct time intervals, six board-certified clinical neurophysiologists classified 300 EEGs into one or more of seven diagnostic categories and assigned a subjective confidence to their interpretations. Each EEG was read by three readers. Each reader interpreted 150 unique studies, and 50 studies were re-interpreted to generate intrarater data. A generalizability study assessed the contribution of subjects, readers, and the interaction between subjects and readers to interpretation variance. Five of the six readers had a median confidence of ≥99%, and the upper quartile of confidence values was 100% for all six readers. Intrarater Cohen's kappa (κc) ranged from 0.33 to 0.73 with an aggregated value of 0.59. Cohen's kappa ranged from 0.29 to 0.62 for the 15 reader pairs, with an aggregated Fleiss kappa of 0.44 for interrater agreement. Cohen's kappa was not significantly different across rater pairs (chi-square=17.3, df=14, p=0.24). Variance due to subjects (i.e., EEGs) was 65.3%, due to readers was 3.9%, and due to the interaction between readers and subjects was 30.8%. Experienced epileptologists have very high confidence in their EEG interpretations and low to moderate I&IR, a common paradox in clinical medicine. A necessary, but insufficient, condition to improve EEG interpretation accuracy is to increase intrarater and interrater reliability. This goal could be accomplished, for instance, with an automated online application integrated into a continuing medical education module that measures and reports EEG I&IR to individual users.

Factors affecting quality of life in epilepsy in a multi-ethnic urban population.

We examined factors associated with quality of life (QOL) among predominantly ethnic minority, low-income patients with epilepsy (PWE). Ninety-four PWE ≥14years old completed standardized questionnaires, including the QOLIE-31. The patients were born in 17 countries, and most of them identified culturally with the United States (44%), the Caribbean (35%), or Latin America (9%). Fifty-three percent of patients received no income other than public assistance. The mean QOLIE-31 score for all subjects was 57.6 (SD: 15.1). A step-wise regression analysis revealed that of 11 possible predictor variables, only perceived epilepsy stigma, seizure frequency, and gender were significantly associated with the QOLIE-31 score and respectively accounted for 16%, 9%, and 5% of its variance. These results suggest that perceived epilepsy stigma is at least as important as seizure freedom in determining quality of life, at least in some populations of PWE. Epilepsy health care providers should take every opportunity to help patients overcome and reduce perceived stigma.

Prevalence of non-convulsive seizure and other electroencephalographic abnormalities in ED patients with altered mental status.

UNLABELLED: Four to ten percent of patients evaluated in emergency departments (ED) present with altered mental status (AMS). The prevalence of non-convulsive seizure (NCS) and other electroencephalographic (EEG) abnormalities in this population is unknown. OBJECTIVES: To identify the prevalence of NCS and other EEG abnormalities in ED patients with AMS. METHODS: A prospective observational study at 2 urban ED. Inclusion: patients ≥13 years old with AMS. Exclusion: An easily correctable cause of AMS (e.g. hypoglycemia). A 30-minute standard 21-electrode EEG was performed on each subject upon presentation. OUTCOME: prevalence of EEG abnormalities interpreted by a board-certified epileptologist. EEGs were later reviewed by 2 blinded epileptologists. Inter-rater agreement (IRA) of the blinded EEG interpretations is summarized with κ. A multiple logistic regression model was constructed to identify variables that could predict the outcome. RESULTS: Two hundred fifty-nine patients were enrolled (median age: 60, 54% female). Overall, 202/259 of EEGs were interpreted as abnormal (78%, 95% confidence interval [CI], 73-83%). The most common abnormality was background slowing (58%, 95% CI, 52-68%) indicating underlying encephalopathy. NCS (including non-convulsive status epilepticus [NCSE]) was detected in 5% (95% CI, 3-8%) of patients. The regression analysis predicting EEG abnormality showed a highly significant effect of age (P < .001, adjusted odds ratio 1.66 [95% CI, 1.36-2.02] per 10-year age increment). IRA for EEG interpretations was modest (κ: 0.45, 95% CI, 0.36-0.54). CONCLUSIONS: The prevalence of EEG abnormalities in ED patients with undifferentiated AMS is significant. ED physicians should consider EEG in the evaluation of patients with AMS and a high suspicion of NCS/NCSE.

Sutton's law in epilepsy: because that is where the lesion is.

Successful epilepsy surgery requires unambiguous identification of the epileptogenic zone. This determination may be a challenge when the pre-surgical evaluation yields conflicting data. We evaluated an adult patient with a right insular mass, but a seizure semiology, interictal EEG, and ictal EEG, suggesting left temporal lobe epilepsy. Resection of the mass, a ganglioglioma, resulted in seizure freedom and disappearance of interictal left temporal lobe epileptiform discharges. This case illustrates the principle that in localization-related epilepsy, the money is usually in the mass.

Relationships among illness representations and depressive symptom severity in predominantly African-American and Caribbean-American people with epilepsy.

Objective: Depression is the most common psychiatric comorbidity among people with epilepsy (PWE) and tends to be more prevalent among people of color (POC) and those with intractable seizures. However, the extent to which illness-related perceptions are associated with depressive symptom severity among POC with intractable seizures is unclear. Method: This cross-sectional study examined relationships among illness representations and self-rated depressive symptoms in 55 PWE (M Age = 41; 61.8% female) with intractable seizures (M seizures per month = 2) who identified as Black/African-American (52.7%), Black/Caribbean-American (27.3%), and/or Hispanic/Latino (21.8%). Epilepsy-related illness perceptions were assessed with the Illness Perception Questionnaire-Revised and depression was measured via the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E). Results: Nearly half of the sample (41.8%) scored above the NDDI-E depression cut-off. PWE endorsing more severe depressive symptoms indicated that their epilepsy had more negative consequences, was hard to comprehend, was insufficiently controlled by treatment, and had a negative emotional impact (p's ≤ 0.02). Controlling for sex, these four illness representations accounted for 48% of the variance in depression severity. Interestingly, participants with probable major depressive episodes were more likely to endorse several psychological causes of seizures compared to non-depressed PWE. Conclusions: Worse depression symptom severity was associated with negative illness perceptions and a tendency to attribute one's epilepsy to psychological causes. Future research is needed to understand how the relationship between negative illness perceptions and depression symptoms unfold over time and whether interventions aimed at modifying illness representations reduce psychological distress in diverse PWE.

Nonconvulsive seizures in patients presenting with altered mental status: an evidence-based review.

Definitive diagnosis of nonconvulsive seizures (NCS) can be made only by electroencephalography, and delay in diagnosis can increase morbidity, resource utilization, and length of hospitalization. We performed an evidence-based literature review to estimate the prevalence of NCS in patients with altered mental status (AMS) of unknown cause. PUBMED, EMBASE, the Cochrane Library, and other resources were searched for studies that included AMS and seizure as topics. The resulting 276 articles were screened for predetermined inclusion and exclusion criteria, leaving 5 studies enrolling 478 patients for review. The prevalence of NCS in patients with AMS ranged from 8 to 30% (overall prevalence of 21.5%, 95% CI: 18-25%), suggesting that the prevalence of NCS is sufficiently high to consider routine use of urgent electroencephalography in such patients. However, methodological weaknesses limit the generalizability of the results. A large, prospective study enrolling and screening for NCS in all patients who present with acute AMS is needed.

Patient beliefs about epilepsy and brain surgery in a multicultural urban population.

We assessed beliefs about epilepsy and brain surgery and the use of alternative epilepsy treatments in a culturally diverse population of people with epilepsy (PWE). Data were obtained from a structured questionnaire administered to 109 PWE treated at a single epilepsy center. Patients were born in 17 countries on five continents. Most patients identified culturally with the Caribbean (41%), United States (39%), or Latin America (9%). Sixty-nine percent of patients endorsed at least one of five stigma-related questions, and 77% used at least one alternative epilepsy treatment. Brain surgery was rated as having a mean dangerousness of 8.3 (on a scale of 1 to 10) among the 94 patients with no history of neurosurgery. In addition, 51% of these patients would not consider surgical treatment even if it were guaranteed to stop their seizures without causing deficits. Educational efforts aimed at reducing both the stigma associated with epilepsy and the fear of resective epilepsy surgery are needed.

A Native Haitian Woman with Unverricht-Lundborg Disease.

Unverricht-Lundborg disease (ULD) is an autosomal recessive progressive myoclonic epilepsy. The prevalence is highest in specific European countries and North Africa. Affected individuals have myoclonic and tonic-clonic seizures and a variable degree of ataxia and cognitive impairment. We report a native Haitian woman with ULD who was wheelchair bound due to nearly continuous myoclonic seizures exacerbated by activity and emotional distress. The seizures and their dramatic increase with volitional activity were recorded during video electroencephalography monitoring. Rational antiepileptic drug therapy controlled the seizures well enough for the patient to achieve a level of independence she had not experienced in over 25 years.

Evaluation of a novel EEG preamplifier.

SUMMARY: The authors performed initial clinical testing of a novel EEG transduction module (ETM), designed to record EEG signals from electrodes with high and unbalanced contact impedances. Twenty patients underwent two consecutive EEG studies. In the first, "experimental" study, electrodes were applied to an unprepared scalp, and the ETM performed initial signal transduction and pre-amplification. The second, "routine" EEG was acquired in the standard manner, with electrode contact impedances of 5 k Omega or less. Power spectral analysis was performed on all electrode signals from three experimental studies, and all studies were interpreted by three board-certified electro-encephalographers. Individual electrode impedances in the experimental studies ranged from 10 to 560 k Omega (mean 129 k Omega). Power spectra on 54 of 57 electrode signals analyzed were free of 60-Hz noise. The majority of experimental studies were technically adequate, and technical limitations were unrelated to the ETM. Interrater reliability of preparation-free and standard EEG interpretation was high. The ETM device is an effective "preparation-free" technology in the setting of a clinical EEG laboratory. It provided easily interpretable EEG signals free of 60-Hz noise, recorded from electrodes with high and unbalanced impedances placed on completely unprepared scalp with minimal electrode paste.

Uncommon, exceptional and atypical: a case of frontal lobe epilepsy due to cortical dysplasia.

We report a case of frontal lobe epilepsy due to focal cortical dysplasia that included three independent unusual features. The patient, a 45-year-old, right-handed woman, had her first seizure at age 29, well into adulthood. Seizures had been easily controlled with medication for 15 years, then without provocation they became medically intractable during a single, identifiable day. Resection of the dysplastic tissue in the posterior dorsolateral right frontal cortex rendered the patient seizure-free, but produced a significant, non-fluent, Broca type, crossed aphasia. In addition, the seizure semiology was striking and remarkable, a common finding in frontal lobe epilepsy. [Published with video sequences].

Epileptic monocular nystagmus.

The authors describe a case of epileptic monocular nystagmus in a cognitively intact adult with normal vision. Focal seizures originated in the occipital lobe contralateral to the involved eye, and an associated structural lesion was thought to represent a forme fruste of Sturge-Weber syndrome. It is hypothesized that the seizure discharge either activated a cortical saccade region and caused simultaneous supranuclear inhibition of ipsilateral eye movement or triggered monocular eye movement commands.