A model for internalized stigma in children and adolescents with epilepsy

ObjectivePerceptions of stigma in children and adolescents with epilepsy are associated with higher rates of mental health problems. The purpose of this study was to test relationships in a model that identified variables most strongly associated with perceptions of stigma in children and adolescents with epilepsy. Our ultimate goal is to develop a theoretical foundation for future intervention research by identifying variables associated with perceptions of stigma that are potentially amenable to psychosocial interventions.MethodsParticipants were 173 children and adolescents with epilepsy who were between 9 and 14 years of age. Data were collected in telephone interviews. Stigma was measured using a self-report scale. Data were analyzed using structural equation modeling.ResultsGreater need for information and support, more fear and worry related to having epilepsy, greater seizure severity, and younger age were significantly associated with greater perceptions of stigma. Female gender, greater need for information and support, having at least one seizure in the past year, and lower self-efficacy for seizure management were significantly associated with more fear and worry related to having epilepsy.ConclusionsFindings suggest that perceptions of stigma are associated with two variables that are amenable to psychosocial interventions: fear and worry about having epilepsy and need for information and support. Future research should test the efficacy of interventions that reduce fear and worry, provide information about epilepsy, and reduce need for support.     

Characteristics associated with quality of life among people with drug-resistant epilepsy

Quality of Life (QoL) is the preferred outcome in non-pharmacological trials, but there is little UK population evidence of QoL in epilepsy. In advance of evaluating an epilepsy self-management course we aimed to describe, among UK participants, what clinical and psycho-social characteristics are associated with QoL. We recruited 404 adults attending specialist clinics, with at least two seizures in the prior year and measured their self-reported seizure frequency, co-morbidity, psychological distress, social characteristics, including self-mastery and stigma, and epilepsy-specific QoL (QOLIE-31-P). Mean age was 42 years, 54% were female, and 75% white. Median time since diagnosis was 18 years, and 69% experienced ≥10 seizures in the prior year. Nearly half (46%) reported additional medical or psychiatric conditions, 54% reported current anxiety and 28% reported current depression symptoms at borderline or case level, with 63% reporting felt stigma. While a maximum QOLIE-31-P score is 100, participants’ mean score was 66, with a wide range (25–99). In order of large to small magnitude: depression, low self-mastery, anxiety, felt stigma, a history of medical and psychiatric comorbidity, low self-reported medication adherence, and greater seizure frequency were associated with low QOLIE-31-P scores. Despite specialist care, UK people with epilepsy and persistent seizures experience low QoL. If QoL is the main outcome in epilepsy trials, developing and evaluating ways to reduce psychological and social disadvantage are likely to be of primary importance. Educational courses may not change QoL, but be one component supporting self-management for people with long-term conditions, like epilepsy.     

Characteristics of people with epilepsy who attend emergency departments: Prospective study of metropolitan hospital attendees

Purpose: One fifth of people with established epilepsy attend hospital emergency departments (EDs) and one half are admitted each year. These ED visits are not necessarily required, and unplanned hospitalizations are costly. Reducing avoidable ED visits and admissions is a target in most health services. The development of interventions is, however, challenging. Policymakers lack information about users’ characteristics, factors associated with ED use, as well as quality of care. This study provides this information. Methods: We prospectively recruited patients attending three London EDs for seizures. They completed questionnaires on service use and psychosocial state. Key Findings: Eighty‐five patients were recruited. The mean age was 41; 53% were male. The average number of ED attendances in the prior year (mean 3.2; median 2) exceeded that of other ED users and those with most chronic conditions. ED use was not homogenous, with some patients attending frequently. Compared to the wider epilepsy population, ED attendees experienced more seizures, anxiety, had lower knowledge of epilepsy and its management and greater perceived epilepsy‐related stigma. In the previous 12 months, most patients’ epilepsy outpatient care was consistent with standard criteria for quality. In descending order, lower knowledge, higher perceived stigma, poorer self‐medication management, and seizure frequency were associated with more emergency visits. Significance: People with epilepsy presenting to EDs reattend frequently. Interventions aiming at reduced ED use by this population should address lower knowledge, stigma, suboptimal self‐management, and frequent seizures reported by patients.     

Deconstructing stigma in psychogenic nonepileptic seizures: An exploratory study

Psychogenic nonepileptic seizures (PNES) are classified as a mental disorder, the manifestations of which superficially resemble epileptic seizures.There is a notable lack of in-depth qualitative or quantitative studies investigating the stigma attached to PNES. The current study is an exploratory analysis into the nature of perceived stigma in those with PNES when compared with individuals with epilepsy. Individuals with epilepsy (n = 78) and PNES (n = 47) were recruited from a United Kingdom hospital or membership-led organizations for individuals living with seizures. Participants were asked to complete a series of questionnaires investigating health-related quality-of-life components (NEWQOL-6D), anxiety (GAD-7), depression (NDDI-E), seizure frequency and severity (LSSS-3), and illness perception (B-IPQ). Perceived stigma was measured using one question taken from the NEWQOL-6D. Individuals with PNES reported a greater level of perceived stigma than those with epilepsy (p = 0.04). Our results indicate that the risk of experiencing perceived stigma in PNES was 42% higher than the risk in epilepsy. In epilepsy, but not PNES, perceived stigma was significantly associated with seizure frequency, anxiety, depression, and many of the sequelae of the condition. In both conditions, self-control was associated with stigma (rho ≥ 0.34, p ≤ 0.01). This study was exploratory, and so definitive conclusions cannot be made; however, our findings suggest that the majority (87.2%) of individuals with PNES reported experiencing some degree of perceived stigma, the risk of which is greater than that in epilepsy. Further research is needed into the prevalence, nature, and consequences of stigma in PNES.     

Air travel and seizure frequency for individuals with epilepsy.

This study investigated whether air travel is associated with an increase in seizures for individuals with epilepsy. Thirty-seven participants monitored their seizure frequency for one week prior to flying and for one week after flying. For the sample as a whole, seizures were significantly more common after flying (p=.02). No seizures were reported as occurring during flight. Participants who experienced an increase in seizures after flying compared to those who did not (a) had a higher baseline of seizure frequency (p=.004), (b) were more likely to have previously experienced an increase in seizures after flying (p=.001), (c) were more worried about having a seizure while flying (p=.001) and (d) were more likely to avoid air travel (p=.02). Participants with complete seizure control prior to flying did not experience seizures after flying. Distance traveled, time zones crossed, duration of flight and direction of flight were not significantly different for those with seizure increase than for those without such an increase. This study suggests that air travel promotes an increase in seizures for those with a prior history of flight related seizures and a relatively high baseline seizure frequency.     

School performance of Nigerian adolescents with epilepsy

PURPOSE: The study assessed the school performance of Nigerian adolescents with epilepsy compared with healthy controls and examined the variables correlating with their academic difficulties. METHODS: The school grades of adolescents with epilepsy aged 12 to 18 years (n = 73) over the past academic year were compared with the grades of their classmates of the same age and gender. Risk factors possibly associated with school performance, such as adolescent variables (age, gender, perceived stigma, attitude toward epilepsy, and psychopathology), seizure variables (age at onset of illness, years of illness, types of seizures, and frequency of seizures per month), drug variables [types of antiepileptic drugs (AEDs), number of AEDs and side effects of AEDs], and family variables (family's socioeconomic status, family functioning, caretakers' psychopathology, and caretakers' perceived stigma) were assessed. RESULTS: The mean school grades of adolescents with epilepsy are significantly lower than are those of their healthy controls (p < 0.001) in all the subjects. The variables that significantly predict poor school performance in adolescents with epilepsy include psychopathology in the caretaker (p < 0.001), adolescents' perceived poor family functioning (p = 0.002), adolescents' attitude toward the illness (p = 0.001), adolescents' felt stigma (p = 0.002), externalizing symptoms in the adolescents (p = 0.004), and duration of illness (p = 0.024). CONCLUSIONS: The determinants of poor school performance in adolescents with epilepsy in Nigeria are multivariate, with psychosocial factors most important. These should be noted for early identification and screening of those children at greatest risk for academic failure and the greatest need for appropriate educational remediation services.     

Written accounts of living with epilepsy: A thematic analysis

This study examines the subjective experience of living with epilepsy by thematically analyzing participants' written accounts of their condition. Writing is seen as an individual act allowing for private exploration, reflection and expression of thoughts and feelings. Participants (n = 20) were recruited from a United Kingdom hospital and from membership-led organizations for individuals living with seizures. Participants were asked to produce four pieces of writing: 1) about their thoughts and feelings about their condition; 2) a letter to their condition; 3) a letter to their younger self; and 4) about a personal value. All writings were analyzed thematically using a theory- and data-driven approach. Five main-themes and 22 sub-themes emerged from the data. Theme 1: ‘seizure onset’ demonstrated that the development of seizures and subsequent diagnosis was an important event that could change an individuals' identity. Theme 2: ‘seizure symptoms’ revealed participants externalized their seizures as an intrusive agent with a constant presence in their lives. Theme 3: ‘treatment and outcome’ reflected medication as an essential means to controlling seizures with subsequent side effects being perceived as a compromise. Theme 4: ‘living with epilepsy’ explored the consequences of the condition including restrictions and stigma. Theme 5: ‘displays of coping’ demonstrated that, for the most part, participants were keen to present themselves as living well with epilepsy. The results add to the growing research applying qualitative methodologies to investigate the phenomenology of epilepsy. Qualitative research can improve our understanding and awareness of the condition, as well as inform clinical practice.     

About one-half of adults with active epilepsy and seizures have annual family incomes under $25,000: The 2010 and 2013 US National Health Interview Surveys

People with active epilepsy are those who reported being told that they have epilepsy or a seizure disorder and either take antiseizure medication or have had a seizure during the past 12 months. We used combined 2010 and 2013 National Health Interview Survey (NHIS) data on US adults with active epilepsy to examine whether taking medications and seizure frequency differed by sex, age, race/ethnicity, and reported or imputed annual family income. Of adults with active epilepsy, 45.5% reported taking medication and having at least one seizure, 41.3% reported taking medication and having no seizures, and 13.2% reported not taking any medication and having at least one seizure. About one-half of adults with active epilepsy and seizures have annual family incomes of less than $25,000. Promoting self-management supports and improved access to specialty care may reduce the burden of uncontrolled seizures in adults with epilepsy.     

Estimating the incidence of first unprovoked seizure and newly diagnosed epilepsy in the low-income urban community of Northern Manhattan, New York City

Purpose : To estimate the incidence and mortality associated with first unprovoked seizure or newly diagnosed epilepsy in a low-income, predominantly Hispanic community in Northern Manhattan, New York City.
Methods : We performed a population-based study to determine the incidence of first unprovoked seizure or newly diagnosed epilepsy. Participants were Northern Manhattan residents seen at area hospitals and nursing homes between 2003 and 2005. Cumulative probability of mortality and standardized mortality ratios (SMRs) were also calculated.
Results : Among 209 incident cases identified, 123 (58.9%) presented with an incident single unprovoked seizure. A total of 138 (66.0%) participants were Hispanic and 94 (45.0%) had a median household income under $15,000/year. The overall age and sex-adjusted incidence of all unprovoked seizures was 41.1 (95%CI = 35.4–46.8) per 100,000 person-years. Higher incidence was observed in low-income groups. Incidence among Hispanics was similar to that of non-Hispanic whites and non-Hispanic blacks. The cumulative probability of mortality was 17% (95%CI = 12–24%) by 3 years after diagnosis and was significantly greater in females and in those with an identified etiology. SMRs were significantly increased for all groups with respect to age, Hispanic ethnicity, middle and high income, partial seizure type, and remote symptomatic etiology. Idiopathic/cryptogenic and progressive symptomatic etiologies, low income, gender, and non-Hispanic ethnicity were not associated with a significantly increased SMR.
Conclusion : Incidence of first unprovoked seizure or newly diagnosed epilepsy did not differ by race-ethnicity. Although lower income was associated with higher incidence, higher income was associated with an increased SMR. Future research should examine reasons for differential incidence by income.     

Examining perceived stigma of children with newly-diagnosed epilepsy and their caregivers over a two-year period

The purpose of this study was to examine the following: 1) the course of perceived epilepsy-related stigma among children newly diagnosed with epilepsy (n = 39) and their caregivers (n = 97) over a two-year period, 2) the influence of seizure absence/presence on children and caregivers' perception of epilepsy-related stigma, and 3) the congruence of child and caregiver perception of child epilepsy-related stigma. Participants completed a measure of perceived epilepsy-related stigma at three time points, and seizure status was collected at the final time point. Results indicated that both caregivers (t_1,76 = − 2.57, p < .01) and children with epilepsy (t_1,29 = − 3.37, p < .01) reported decreasing epilepsy-related stigma from diagnosis to two years postdiagnosis. No significant differences were found in caregiver and child reports of perceived stigma for children experiencing seizures compared with children who have been seizure-free for the past year. Results revealed poor caregiver–child agreement of perceived epilepsy-related stigma at all three time points. These data suggest that while children with epilepsy initially perceive epilepsy-related stigma at diagnosis, their perception of stigma decreases over time. Having a better understanding of the course of epilepsy-related stigma provides clinicians with information regarding critical times to support families with stigma reduction interventions.     

Social anxiety and its psychosocial impact on the lives of people with epilepsy

Little is known about social anxiety among people with epilepsy (PWE), although PWE are more likely to be diagnosed with social anxiety disorder than the general population. The purpose of this study was to determine which psychosocial and seizure-related variables are associated with social anxiety. It was hypothesized that social anxiety would be positively correlated with perceived seizure severity, stigma, impact of epilepsy, fear of negative evaluation, and experiential avoidance. Further, social anxiety would be negatively correlated with epilepsy knowledge and disclosure of epilepsy. Finally, if a seizure occurred in public and others were unaware of the epilepsy, participants would report greater judgment, anxiety, and rumination compared with those in a situation where others were aware of the epilepsy. A total of 101 individuals with epilepsy participated in this online study. Social anxiety was found to correlate with both psychosocial and seizure-related variables in the expected directions. Further, social anxiety predicted significant variance in stigma and disclosure beyond known predictors of stigma. Participants in both conditions (disclosed diagnosis of epilepsy versus undisclosed diagnosis of epilepsy) were equally distressed by having a seizure in public. These findings provide an initial basis for discerning how to best assess and support PWE with social anxiety.     

Results of a research study evaluating WebEase, an online epilepsy self-management program

WebEase (Epilepsy Awareness, Support, and Education) is an online epilepsy self-management program to assist people with taking medication, managing stress, and improving sleep quality. The primary study aims were to determine if those who participated in WebEase demonstrated improvements in medication adherence, perceived stress, and sleep quality. Participants were randomized to a treatment (T) or waitlist control (WCL) group (n = 148). At follow-up, participants in the T group reported higher levels of medication adherence than those in the WLC group. Analyses were also conducted comparing those who had completed WebEase modules with those who had not. Those who had completed at least some modules within the WebEase program reported higher levels of self-efficacy and a trend toward significance was observed for the group × time interactions for medication adherence, perceived stress, self-management, and knowledge. The results highlight the usefulness of online tools to support self-management among people with epilepsy.     

Behavioral, social, and affective factors associated with self-efficacy for self-management among people with epilepsy

The purpose of the study described in this article was to evaluate the extent to which selected behavioral, social, and affective factors contribute to self-reported epilepsy self-efficacy. Participants completed three assessments 3 months apart, with only those completing both the first and second assessments included in this analysis. Self-efficacy scores at the second assessment were regressed on the behavioral, social, and affective characteristics ascertained at the first assessment. The analysis revealed that self-management, depressive symptoms, and seizure severity explain the most variance in self-efficacy; patient satisfaction and stigma are less important predictors; and social support and regimen-specific support are not significant predictors. The results provide direction for identifying people with low levels of self-efficacy and highlighting areas that might help enhance self-efficacy in persons with epilepsy.     

Stigma, seizure frequency and quality of life: the impact of epilepsy in late adulthood.

Epilepsy is one of the most common neurological disorders of late adulthood, yet little research has examined the impact of epilepsy on the quality of life of older people. Current measures of health-related quality of life (HRQOL) have been developed and used almost exclusively in adults under the age of 65. The issues, which affect HRQOL in younger adults, may differ from those which affect older adults who may have age-related physical limitations and multiple co-morbidities. This study sought to explore the HRQOL and psychosocial function of a community dwelling sample of 64 older adults with epilepsy compared with a similar, age-matched control group. An additional objective of the study was to examine the impact of perceived stigma and seizure frequency on HRQOL and psychosocial well-being. Results indicated that HRQOL and psychosocial functioning in the epilepsy group was significantly impaired relative to normal controls. A greater perception of stigma and more frequent seizures was also strongly related to poor quality of life and reduced psychosocial function. Although more than two thirds of the sample had seizure frequency of less than one per year, it was apparent that even infrequent seizures had the facility to impair HRQOL, suggesting that in older adults, the apprehension induced by even the possibility of a seizure may be sufficient to reduce HRQOL. The results have implications for the clinical management of epilepsy and suggest the need for further research in older populations.     

Perceived self-control of seizures in patients with uncontrolled partial epilepsy.

Many patients with epilepsy have warning symptoms prior to seizure onset, and some of these individuals report the ability to abort or prevent these seizures. We investigated the clinical characteristics of perceived self-control of seizures in 174 patients with uncontrolled partial epilepsy. The warning symptoms were categorized as premonitory (prodrome) and as initial symptoms of simple partial seizure onset, depending on the relationship between the warning events and the ensuing seizures. About 50% of the patients with simple partial seizure onset and about 70% of those with prodrome or premonitory symptoms reported that they could abort or prevent their seizures by various self-developed techniques. Patients who attempted to abort or prevent their seizures reported success rates as high as 80%. The proportion of patients with secondary generalized seizures was significantly lower in patients who tried to abort their seizures than in those who did not (p<0.05). The ability to prevent seizures was significantly higher in patients with brain lesions on MRI than in those without lesions (p<0.05). These results suggest that spontaneously developed methods are helpful in controlling seizures in some patients with uncontrolled partial epilepsy and that the potential success of self-control methods may be influenced by structural abnormalities on brain MRI.     

Self-efficacy, knowledge, health beliefs, quality of life, and stigma in relation to osteoprotective behaviors in epilepsy

It is well reported in the epilepsy literature that use of antiepileptic drugs (AEDs) leads to bone loss. Validated instruments were administered to assess knowledge, health behavior, quality of life, and stigma, to determine their effects on self-efficacy for osteoprotective and self-management behaviors. This adult epilepsy population had a mean age of 45, with 20 years of AED exposure. Fifty subjects were Caucasian and 44 were non-Caucasian. By one-way ANOVA, there were significant differences in self-efficacy based on ethnicity, medical assistance, status, and seizure frequency. Differences in knowledge based on ethnicity, education, and income were also noted. Regression analysis revealed that the factors that most predict self-efficacy for calcium, exercise, and self-management do not parallel each other. Age and ethnicity were predictive of self-efficacy for epilepsy self-management only. Medical management factors varied among the models. Overall quality of life was a positive predictor for both calcium and exercise self-efficacy.     

Epilepsy in hemiplegic cerebral palsy due to perinatal arterial ischaemic stroke

Aim The aim of this study was to describe the frequency, risk factors, manifestations, and outcome of epilepsy in children with hemiplegic cerebral palsy (CP) due to perinatal arterial ischaemic stroke (AIS). Method The study group comprised 63 participants (41 males, 22 females) from a population‐based CP register whose brain imaging showed perinatal AIS. Information collected included occurrence of neonatal seizures, family history of epilepsy, motor function and epilepsy onset, treatment, and outcome. Electroclinical findings were classified according to seizure semiology, seizure type, and epilepsy syndrome. Results Mean age of participants at the time of study was 10 years 6 months (SD 4y 7mo, range 4–20y). Gross Motor Function Classification System levels I and II were reported in 96% of participants, and Manual Ability Classification System levels I and II were reported in 79% of children. Thirty‐four children (54%) developed epilepsy. Term delivery and more severe motor impairment were associated with epilepsy, but neonatal seizures and family history of epilepsy were not. Initial seizures were epileptic spasms, focal seizures, or myoclonic seizures. Focal seizure semiology suggested Rolandic or occipital seizure origin in the majority of children. Focal epileptic discharges in children with focal seizures had features of idiopathic partial epilepsy. Only 15% of children had active epilepsy 10 years after onset. Interpretation Despite a high incidence of epilepsy in children with hemiplegic CP due to AIS, the prognosis for seizure remission is good. Many children have clinical features, electroencephalography findings, and remission typical of idiopathic partial epilepsy.     

Quality of Life of People with Epilepsy: A European Study

Summary: Purpose: To study the impact of epilepsy and its treatment on people with epilepsy in Europe. We therefore aimed to collect data from as many countries as possible.
Methods: Clinical and demographic details and information about psychosocial functioning was collected using self-completed questionnaires mailed to members of epilepsy support groups.
Results: Quality of life data was collected from >5,000 patients living in 15 countries in Europe. Over a third of all respondents had frequent seizures, and a fifth believed that their seizures were not well enough controlled by antiepileptic medication. Reported levels of side effects from medication were high. A significant number of respondents reported changing their medication because of side effects or poor control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. Half of all respondents felt stigmatised by their epilepsy. There were significant differences by seizure type and frequency in the way respondents scored on measures of the perceived impact of their condition, the stigma associated with it and their health status as measured by a generic scale, the SF36.
Conclusions: This study confirms the findings of previous smaller-scale studies that reducing side effects and achieving better control of seizures are key to improving the quality of life of people with epilepsy, as is reducing the stigma and handicap associated with it.     

Profile of childhood epilepsy in Bangladesh

Very little is known about childhood epilepsies in Bangladesh. This study was conducted within a national children's hospital in Dhaka city to provide baseline information on diagnosis and clinical outcomes of 151 children (98 males, 53 females, age range between 2 months to 15 years, median age of 3 years). Participants who presented with recurrent unprovoked seizures were followed up in an epilepsy clinic for at least 1 year. Of presenting families, 68.3% were from middle-income and lower-income groups. A history of perinatal asphyxia and neonatal seizures was present in 46.4% and 41.1% of participants respectively. Generalized, partial, and unclassifiable epilepsy were found in 63.6%, 25.2%, and 11.2% respectively. Severe outcome (malignant) epilepsy syndromes were diagnosed in 14.6%. Symptomatic epilepsy was found in 61%. Poor cognitive development was present in 72.8% and poor adaptive behaviour in 57%. Poor seizure remission occurred in 50.3%. Factors most predictive of poor seizure remission were: multiple types of seizures, poor cognition at presentation, high rates of seizures, associated motor disability, and EEG abnormalities. The study suggests that most children presenting at tertiary hospitals for seizure disorders come late and with associated neurodevelopmental morbidities. Specialized services are needed closer to their homes. The process for establishing early referral and comprehensive management of childhood epilepsies in Bangladesh requires further study.