Short-Term Impact of Seizures and Mitigation Opportunities.

PURPOSE OF REVIEW: The burden of epilepsy is complex and consists of elements directly related to acute seizures as well as those associated with living with a chronic neurologic disorder. The purpose of this systematic review was to characterize short-term burdens of seizures and to explore the potential value of acute treatments to mitigate these burdens apart from reducing the risk of status epilepticus. RECENT FINDINGS: A systematic literature search was conducted using PubMed to identify articles published from January 1, 2017, to June 22, 2023, that described short-term burdens and acute treatments of seizures. Primary outcomes included those related to short-term burdens of seizures and the benefits of acute treatments to reduce short-term burdens. Of the 1332 articles identified through PubMed and 17 through other sources, 27 had relevant outcomes and were included in the qualitative synthesis. Seizure emergencies negatively affected short-term quality of life and the ability to conduct normal daily living activities and were associated with physical (injury) and financial (emergency transport, hospitalization) burdens. The use of acute treatment was associated with a rapid return (≤ 1 h) to normal function/self for both patients and caregivers and potentially lower healthcare utilization and costs. Seizure action plans may improve knowledge and comfort with seizure care, empowering patients and caregivers. The short-term burden of seizures can create a substantial negative impact on patients and caregivers. Acute treatments may reduce the short-term burdens of seizures in addition to their well-described role to reduce seizure activity and the risk for status epilepticus.

Written seizure action plans for adult patients with epilepsy: Distilling insights from emergency action plans for other chronic conditions.

Seizure emergencies and potential emergencies, ranging from seizure clusters to prolonged seizure and status epilepticus, may affect adults with epilepsy despite stable antiseizure therapy. Seizure action plans (SAPs) are designed for patients and their caregivers/care partners to provide guidance on the individualized treatment plan, including response to potential seizure emergencies and appropriate use of rescue therapy. The use of pediatric SAPs is common (typically required by schools), however, most adults with epilepsy do not have a plan. Patient-centered action plans are integral to care for other chronic conditions and may offer insights applicable to the care of adults with epilepsy. This review analyzes the potential benefits of action plans for medical conditions by exploring their utility in conditions such as asthma, diabetes, chronic obstructive pulmonary disease, heart disease, and opioid overdose. Evidence across these conditions substantiates the value of action plans for patients, and the benefits of adult SAPs in epilepsy are emerging. Because wide implementation of SAPs has faced barriers, other conditions may provide insights that are relevant to implementing SAPs in epilepsy. Based on these analyses, we propose concrete steps to improve the use of SAPs among adults. A recent consensus statement promoting the use of formal SAPs in epilepsy and advances in rescue therapy delivery methods provides support to engage patients around the value of SAPs. The precedent for use of SAPs for pediatric epilepsy patients serves as the foundation to support increased usage in adults. Seizure action plans in the context of improved clinical outcomes are expected to reduce healthcare utilization, improve patient quality of life, and optimize epilepsy management.

Consequences: Bench to home.

Seizure clusters (also referred to as acute repetitive seizures) consist of several seizures interspersed with brief interictal periods. Seizure clusters can break down γ-aminobutyric acidergic (GABAergic) inhibition of dentate granule cells, leading to hyperactivation. Functional changes to GABAA receptors, which play a vital neuroinhibitory role, can include altered GABAA receptor subunit trafficking and cellular localization, intracellular chloride accumulation, and dysregulation of proteins critical to chloride homeostasis. A reduction in neuroinhibition and potentiation of excitatory neurotransmission in CA1 pyramidal neurons represent pathological mechanisms that underlie seizure clusters. Benzodiazepines are well-established treatments for seizure clusters; however, there remain barriers to appropriate care. At the clinical level, there is variability in seizure cluster definitions, such as the number and/or type of seizures associated with a cluster as well as the interictal duration between seizures. This can lead to delays in diagnosis and timely treatment. There are gaps in understanding between clinicians, their patients, and caregivers regarding acute treatment for seizure clusters, such as the use of rescue medications and emergency services. This lack of consensus to define seizure clusters in addition to a lack of education for appropriate treatment can affect quality of life for patients and place a greater burden on patient families and caregivers. For patients with seizure clusters, the sense of unpredictability can lead to continuous traumatic stress, during which patients and families live with a heightened level of anxiety. Clinicians can affect patient quality of life and clinical outcomes through improved seizure cluster education and treatment, such as the development and implementation of a personalized seizure action plan as well as prescriptions for suitable rescue medications indicated for seizure clusters and instructions for their proper use. In all, the combination of targeted therapy along with patient education and support can improve quality of life.

Patient, caregiver, and healthcare professional perspectives on seizure control and treatment goals.

OBJECTIVE: To examine perspectives of adult patients with epilepsy, caregivers, and healthcare professionals (HCPs) on seizure freedom, seizure control, communication, and treatment goals. METHODS: Participants were recruited from online M3 panel and by Rare Patient Voice, and completed the self-administered online STEP Survey (Seize the Truth of Epilepsy Perceptions). Group comparisons used analysis of variance and chi-square tests. RESULTS: The STEP Survey was completed by 400 adult patients with epilepsy, 201 caregivers, and 258 HCPs (112 general neurologists, 96 epileptologists, 50 nurse practitioners/physician assistants). Significantly more patients (61%) and caregivers (66%) than HCPs (45%) agreed that seizure freedom is always a reasonable goal (P < 0.05). On average, patients considered 3.6 seizures/year to be "in control." Of their patients with focal seizures, HCPs reported 47% were seizure-free and 33% were "in control" (63% were having 1-12 seizures/year), and 20% were with "uncontrolled" seizures. Among patients, caregivers, and HCPs, ≥60% agreed that a defining characteristic indicating seizure control was having good quality of life. Patients, caregivers, and HCPs agreed that the emotional, psychological, and relational impact of seizures were least discussed (<50% of each group reporting discussion), but disagreed in their top priority for greater discussion (patients: sudden unexplained death in epilepsy [SUDEP]; HCPs: relational impact of seizures). Although ≥80% of patients and caregivers selected multiple patient life goals as very or extremely important, 49% of patients said they do not share life goals with their HCP. HCPs agreed that patients are not telling them everything they should about their epilepsy (73% of HCPs) or their life goals (81% of HCPs). CONCLUSIONS: Differing perspectives on seizure freedom, seizure control, communication priorities, and treatment goals that were identified in the STEP Survey provide opportunities to improve patient care and outcomes through more effective two-way communication and alignment of goals among patients with epilepsy, caregivers, and HCPs.

Recommendations for development of acute seizure action plans (ASAPs) from an expert panel.

PURPOSE OF REVIEW: Disease-related treatment action plans for acute exacerbations providing information that may be helpful for self-management for patients and caregivers are commonly used for chronic conditions such as asthma and diabetes. However, among patients with epilepsy, a review of the literature suggested that the majority did not have an action plan in place for acute seizure treatment. RECENT FINDINGS: Currently, there is a lack of unified guidance on seizure action plans (SAPs) in the literature. In the authors' opinion, available formats have limitations for practical use and may not be easily customizable to individual patients, and they are not often designed to provide simple-to-follow steps for rapid immediate steps to determine and initiate appropriate treatment of seizure emergencies. Our group reviewed current examples of SAPs and provided guidance on the development of acute seizure action plans (ASAPs) designed to facilitate rapid, appropriate acute care in the community and to be as useful as possible for a wide range of care partners, including those with limited experience. SUMMARY: This paper provides agreed upon expert opinion recommendations and considerations for goals, development process, types of content, and format for an ASAP.

To reveal or conceal? Adult patient perspectives on SUDEP disclosure.

OBJECTIVE: The study aimed to evaluate adult patient or caregiver feelings and viewpoints about sudden unexpected death in epilepsy (SUDEP) awareness. BACKGROUND: The decision to discuss SUDEP with patients and families has created much debate. Many healthcare providers (HCPs) are hesitant to discuss SUDEP because of the perception of evoking unnecessary fear in patients while others argue that informing patients about SUDEP may enhance patient compliance, improve seizure control, and aid in saving lives. This study quantifies patient viewpoints regarding their right to information, requirements of disclosure, and initial responses of fear and patient motivation toward behavioral change. DESIGN/METHODS: This was a prospective random sample survey of adult patients with epilepsy or their caregivers. Every third eligible adult patient with epilepsy or caregiver was given a one-page SUDEP information sheet promoted by the Epilepsy Foundation of America. Participants were then asked if they were interested in completing an eight-item questionnaire assessing their perception of the information. RESULTS: Ninety-four of ninety-six subjects completed the survey (98%). One hundred percent (n = 94) of responders felt they had a right to be informed about SUDEP, and 95% felt that their HCP should be required to inform them. Respondents also indicated that SUDEP awareness motivated them for better medication adherence (89%) and management of lifestyle factors that lower seizure threshold (88%). Thirty percent endorsed increased fear. However, 100% of those patients or caregivers who endorsed fear still felt it was their right to be informed. Patients who endorsed fear were also more likely to be interested in nonpharmacologic treatment options as a result of SUDEP disclosure. CONCLUSIONS: Patients and caregivers feel it is their right to be informed about SUDEP, irrespective of evoked fear. The vast majority of participants endorsed a requirement for HCPs to disclose related information. While some participants endorsed fear, most agreed that SUDEP awareness motivated them to better manage factors that trigger seizures. Patient education regarding SUDEP may play a key role in encouraging modifying lifestyle factors that lower seizure threshold and facilitate more aggressive interventions in patients with pharmacoresistant epilepsy.

Perspectives on seizure clusters: Gaps in lexicon, awareness, and treatment.

Seizure clusters in epilepsy can result in serious outcomes such as missed work or school, postictal psychosis, emergency room visits, or hospitalizations, and yet they are often not included in discussions between health-care professionals (HCPs) and their patients. The purpose of this paper was to describe and compare consumer (patient and caregivers) and professional understanding of seizure clusters and to describe how consumers and HCPs communicate regarding seizure clusters. We reviewed social media discussion sites to explore consumers' understanding of seizure clusters. We analyzed professional (medical) literature to explore the HCPs' understanding of seizure clusters. Major themes were revealed in one or both groups, including: communication about diagnosis; frequency, duration, and time frame; seizure type and pattern; severity; and self-management. When comparing discussions of professionals and consumers, both consumers and clinicians discussed the definition of seizure clusters. Discussions of HCPs were understandably clinically focused, and consumer discussions reflected the experience of seizure clusters; however, both groups struggled with a common lexicon. Seizure cluster events remain a problem associated with serious outcomes. Herein, we outline the lack of a common understanding and recommend the development of a common lexicon to improve communication regarding seizure clusters.

Evaluation of a Seizure Action Plan in an Adult Epilepsy Center.

Background: Seizure action plans (SAPs) provide valuable information for patients to manage seizure emergencies, but are underutilized in adult epilepsy centers. The purpose of this project was to implement a structured SAP for adult patients with epilepsy. Methods: A pre/postimplementation design was used. Provider SAP utilization rates were analyzed over a 16-week period. A pre and postimplementation survey assessed participant perceived impact of the SAP on knowledge and comfort associated with managing seizure emergencies. Provider barriers and facilitators were also assessed. Results: Average provider SAP utilization rate was 51.45%. A total of 204 participants completed the surveys, which showed a significant increase in knowledge and comfort for all items, p < 0.001. At postsurvey analysis, 98% of participants felt that all patients with epilepsy should have a SAP regardless of seizure burden. Discussion: Implementing a structured SAP increased provider utilization and patient and care partner knowledge and comfort of managing seizure emergencies.

Benzodiazepines for the Treatment of Seizure Clusters.

Patients with epilepsy may experience seizure clusters, which are described by the US Food and Drug Administration (FDA) as intermittent, stereotypic episodes of frequent seizure activity that are distinct from a patient's usual seizure pattern. Untreated seizure clusters may increase the risk for status epilepticus, as well as decrease quality of life and increase burden on patients and care partners. Benzodiazepine therapies are the mainstay for acute treatment of seizure clusters and are often administered by nonmedical care partners outside a healthcare facility. Three rescue therapies are currently FDA-approved for this indication, with diazepam rectal gel being the first in 1997, for patients aged ≥  2 years. Limitations of rectal administration (e.g., positioning and disrobing the patient, which may affect ease of use and social acceptability; interpatient variation in bioavailability) led to the investigation of the potential for nasal administration as an alternative. Midazolam nasal spray (MDS) was approved by the FDA in 2019 for patients aged ≥  12 years and diazepam nasal spray (DNS) in 2020 for patients aged ≥  6 years; these two intranasal therapies have differences in their formulations [e.g., organic solvents (MDS) vs. Intravail and vitamin E for absorption and solubility (DNS)], effectiveness (e.g., proportion of seizure clusters requiring only one dose), and safety profiles. In clinical studies, the proportion of seizure clusters for which only one dose of medication was used varied between the three approved rescue therapies with the highest single-dose rate for any time period for DNS; however, although studies for all three preparations enrolled patients with highly intractable epilepsy, inclusion and exclusion criteria varied, so the three cannot be directly compared. Treatments that have been used off-label for seizure clusters in the USA include midazolam for injection as an intranasal spray (indicated for sedation/anxiolysis/amnesia and anesthesia) and tablet forms of clonazepam (indicated for treatment for seizure disorders) and lorazepam (indicated for anxiety). In the European Union, buccal and intranasal midazolam are used for treating the indication of prolonged, acute convulsive seizures and rectal diazepam solution for the indication of epileptic and febrile convulsions; duration of effectiveness for these medications for the treatment of seizure clusters has not been established. This paper examines the literature context for understanding seizure clusters and their treatment and provides effectiveness, safety, and administration details for the three FDA-approved rescue therapies. Additionally, other medications that are used for rescue therapy in the USA and globally are discussed. Finally, the potential benefits of seizure action plans and candidates for their use are addressed. This paper is intended to provide details about the unique characteristics of rescue therapies for seizure clusters to help clarify appropriate treatment for individual patients.

Epilepsy Treatment Complacency in Patients, Caregivers, and Health Care Professionals.

OBJECTIVE: To explore the perspectives of adult patients with epilepsy, caregivers, and health care professionals (HCPs) on treatment for seizures and treatment decisions, we developed and administered the STEP Survey (Seize the Truth of Epilepsy Perceptions). METHODS: Participants were recruited from online panel M3 and by Rare Patient Voice and completed the self-administered online STEP Survey. Analysis of variance and chi-square tests were used for group comparisons. RESULTS: The STEP Survey was completed by 400 adult patients, 201 caregivers, and 258 HCPs. Patients estimated reporting 45% of their seizures to their HCP, whereas caregivers estimated 83% and HCPs estimated 73% were reported. The most common reason for not reporting seizures was that the seizures were not serious enough to mention (patients 57%; caregivers 66%). A minority of patients (25%) and caregivers (30%) were very or extremely likely to ask their HCP about changing antiseizure medication (ASM) in the next 12 months. The HCP was most frequently selected by patients, caregivers, and HCPs as the person who initiates discussion of changing ASMs (patients 73%/caregivers 66%/HCPs 75%) and increasing ASM dosage (patients 77%/caregivers 68%/HCPs 81%). A majority of patients (65%) and caregivers (68%) somewhat or strongly agreed that they do not change ASMs due to fear of getting worse. HCPs perceive this fear less often, stating that 50% of their patients feel afraid when a second ASM was added. CONCLUSIONS: Improved reporting of all seizures, discussion of treatment changes, and the impact of fear on treatment decisions provide opportunities to reduce complacency and optimize patient outcomes.

Comparing patients' and practitioners' views on epilepsy concerns: a call to address memory concerns.

The objective was to compare practitioners' impressions of patients' concerns with those expressed by the patients themselves. Prior to clinical interaction, adult patients with epilepsy and their established practitioners were asked to choose their top five concerns via a modified version of the Epilepsy Foundation Concerns Index. Patients with epilepsy (n=257) with varying degrees of seizure control from the outpatient clinic practices of five prescribing practitioners completed the modified concerns index. The three most frequent concerns reported by patients were having a seizure unexpectedly, issues related to driving, and memory problems. These were similar to those reported by the practitioners, though memory was much less of a concern expressed by the practitioner. For the paired data, the concern with the largest gap from the patients' perspective was "your memory." Though there was an overlap, patients were concerned more about life issues and practitioners were concerned about clinical issues. This should serve as a major "wakeup call" to address memory problems in patients with epilepsy, regardless of seizure control.

An evaluation of pharmacists' knowledge of women's issues in epilepsy.

OBJECTIVE: Although epilepsy affects men and women equally, there are many women's health issues in epilepsy. These issues challenge both the woman with epilepsy and the many health care professionals involved in her care. As antiepileptic drugs (AEDs) play a major role in the treatment of epilepsy, pharmacists can serve an important function in the health care of patients with this chronic disease. The goal of this educational project was to assess pharmacists' knowledge of women's issues in epilepsy using the Knowledge of Women's Issues and Epilepsy II (KOWIE-II) questionnaire. METHODS: In this cross-sectional study we used the valid and reliable KOWIE-II questionnaire, a 10-item questionnaire on women's issues in general as well as pregnancy-related issues. A random sample of pharmacists registered in Ohio either were sent the KOWIE-II questionnaire or completed it prior to a live seminar. Demographic and practice-related data were collected. A percentage correct score was calculated per pharmacist. RESULTS: Our sample consisted of 152 completed surveys. On the questionnaire, the overall average correct score was 60.3%. Nearly 75% of pharmacists had a correct score for the statement inquiring about the drug interaction between enzyme-inducing AEDs and contraceptives. Slightly less than 70% knew of the issue of AED-induced bone loss. Almost one-third (32.2%) of the respondents answered incorrectly when asked about the frequency of sexual dysfunction in women with epilepsy, though an even higher percentage chose "don't know." Most of the pharmacists (69.1%) stated "don't know" when asked about the relationship between hormones and seizure control. More than 70% correctly answered four of the six pregnancy-related statements (folic acid=77.0%, healthy babies=82.9%, continued AED adherence during pregnancy=86.8%, choice of AED during pregnancy=71.1%). Fewer pharmacists knew about vitamin K supplementation (57.9%), and even fewer answered the question on breastfeeding correctly (33.6%). Pharmacists who interacted with the most patients per month had the highest scores. CONCLUSION: Pharmacists are in a key position to help women with epilepsy, and though there are some areas where pharmacists are generally knowledgeable about women's issues in epilepsy, there are still gaps in knowledge where educational interventions are clearly needed.

Perceived risk, resources, and perceptions concerning driving and epilepsy: a patient perspective.

Previous research on driving and epilepsy has focused primarily on determining predictors of who will continue to drive when told not to. An analysis of health behavior attitudes and beliefs in persons with epilepsy may provide insight into effective patient counseling. A three-page, 46-item questionnaire was adapted and completed by 213 respondents with epilepsy. Nineteen percent indicated that in order to drive, they were not completely honest about their seizure frequency. Twenty-six percent reported having had a car accident because of a seizure. On Safety Concern, Attitudes toward Driving, Perceived Severity/Susceptibility, Perceived Barriers, Helping Relationships, and Self-Efficacy, there were no significant differences with respect to gender or place of residence. Respondents indicated that being in good health and taking precautions were important to them. Predictors of driving behavior included race/ethnicity, employment status, dishonesty about seizure frequency with the doctor, Attitudes toward Driving, Perceived Severity/Susceptibility, Perceived Barriers to changing driving behavior, and Self-Efficacy. Recommendations for communication strategies are discussed.

Exercise, diet, health behaviors, and risk factors among persons with epilepsy based on the California Health Interview Survey, 2005.

Based on the 2005 California Health Interview Survey, persons with a history of epilepsy report lower educational attainment, lower annual income, and poorer health status, similar to other state-based epidemiological surveys. Previous studies have found persons with epilepsy exercise less and smoke more than the nonepilepsy population. The medical literature has also shown that antiepileptic drugs may cause nutritional deficiencies. Persons with a history of epilepsy in the 2005 CHIS report they walk more for transportation, drink more soda, and eat less salad than the nonepilepsy population. Exercise and dietary behaviors at recommended levels have been found to reduce mortality from many comorbid conditions such as cardiovascular disease, stroke, depression, anxiety, and osteoporosis for which persons with epilepsy are at increased risk. Health professionals in the epilepsy field should step up their efforts to engage patients in health promotion, especially in the areas of exercise, diet, and smoking cessation.

The validity and reliability of the Knowledge of Women's Issues and Epilepsy (KOWIE) Questionnaires I and II.

The Knowledge of Women's Issues in Epilepsy (KOWIE) Questionnaires I and II were developed to assess what women with epilepsy (WWE) and practitioners know about relevant topics and concerns. Prior to disseminating any tool, an instrument should be both valid and reliable. The purpose of this study was to report the validity and reliability of the KOWIE Questionnaires I and II. To establish validity, the original KOWIE was sent to five experts who critiqued the relevance of each item. A content validity inventory (CVI) was developed later and sent to 20 additional epilepsy experts across the country. Tool stability was evaluated by test-retest procedures. Patients and practitioners completed corresponding tools on day one, and 24 hours later, on day two. Participants were asked to not review information on the topic of interest until after study procedures were completed. Sixteen of 20 expert responses were included in data analysis; 4 were excluded due to incomplete data. The CVI correlation coefficient was 0.92. Test-retest results from all 9 patients and 18 of 20 healthcare professionals were included in data analysis. Correlation coefficients were 0.88 and 0.83 for the KOWIE I and II, respectively, confirming these questionnaires are valid and reliable. While future knowledge may require altering both tools, the current instrument may be used as an assessment tool and guide intervention as it pertains to outcomes in WWE.

An Evaluation of the Effects of Methylphenidate on Outcomes in Adult Epilepsy Patients.

Purpose. To determine if methylphenidate (MPH) therapy can improve cognition in adult epilepsy patients on multiple antiepileptic drugs (AEDs), we assessed the impact of MPH on seizure activity, quality of life, cognition, and fatigue in patients with a primary diagnosis of localization-related epilepsy.Methods. This was an open-label, nonrandomized 3-month study. MPH (Ritalin) was added to patients' current antiepileptic drug regimens. Outcome measures included seizure activity, select AED serum concentrations, quality of life (via Quality of Life in Epilepsy-89 questions (QOLIE-89)), cognition (via Microcog), and fatigue (via a visual analog scale) at baseline and at monthly intervals for the treatment phase.Results. Eleven patients were enrolled and eight completed this pilot study. Of the eight completing the study, five were seizure-free at baseline and throughout the study. One patient had an increase, one a decrease, and one no change in seizure activity. No serious adverse events were observed. On average, serum AED concentrations changed <10% from baseline to the end of the study. Mean overall QOLIE-89 scores and select domains improved significantly from baseline. All Microcog domains improved from baseline. Fatigue also improved significantly.Conclusions. Adult epilepsy patients received relief from sedation with MPH and showed an improved quality of life, without significant alteration of seizure control.

A Prospective Evaluation of the Effects of a 12-Week Outpatient Exercise Program on Clinical and Behavioral Outcomes in Patients with Epilepsy.

Purpose. We hypothesized that patients randomized to an exercise program would demonstrate a measurable improvement in behavioral outcomes with no adverse clinical outcomes, as compared with control patients.Methods. This randomized, prospective, parallel, and controlled study spanned 12 weeks. Twenty-eight patients were randomized either to participate in a supervised exercise program (Exercise) or to continue their current level of activity with no planned intervention (Control). The Exercise group worked with an exercise physiologist three times per week. At specific intervals, behavioral (QOLIE-89, POMS, PSDQ, Self-Esteem) and clinical (seizure activity, antiepileptic drug (AED) concentrations) outcomes were measured.Results. Twenty-three patients completed the study (Exercise n = 14, Control n = 9). Of the four patients in the Exercise group with active seizures, two had no change, one had an increase, and one had a decrease in seizure activity. Of the three patients in the Control group with active seizures, one had no change, one had an increase, and one had a decrease in seizure activity. In all patients, there was <26% coefficient of variation in AED concentrations over the 12-week study, suggesting little or no impact of the exercise intervention. The overall quality of life and two domain scores improved from baseline to Week 12 in the Exercise group (P = 0.031), while the Control group score did not change (P = 0.943). In the Exercise group, there were several measures of physical self-concept and vigor that improved and total mood disturbance decreased from the beginning to the end of the program.Conclusion. This is the first randomized, controlled study of exercise in patients with epilepsy. Behavioral outcomes are positively influenced by moderate exercise and there is no impact on seizure frequency. This suggests that exercise should not be discouraged in the care of epilepsy patients. The ability to offer an exercise program adds a health promotion component to the current plan of care provided by our comprehensive epilepsy program.

A health literacy assessment of the National Epilepsy Foundation Web site.

Health literacy is defined as the degree to which individuals can obtain, process, and understand basic health information and services needed to make appropriate health decisions. Based on the 2003 US National Assessment of Adult Literacy (NAAL), more than 90 million people have literacy levels rated as "basic" or "below basic." The Institute of Medicine recommends that health-related information be written at a sixth grade level or below. As Web-based health information is being accessed by more than 50 million people, a reading level assessment of the National Epilepsy Foundation of America Web site was undertaken. Two online programs were used to assess the reading level of each Web page in two main areas, "Understanding Epilepsy" and "Living with Epilepsy," using established readability formulas. One hundred seventy-six Web links were evaluated in English and 43 in Spanish. Based on the Flesch Reading Ease and Huerta Reading Ease assessments, 5.7% of National Epilepsy Foundation Web pages in English and 31-46% in Spanish had a sixth grade or lower reading level. Similar results have been reported in previous reviews of other health education Web sites in cancer, pediatrics, and asthma. The National Epilepsy Foundation Web site, a well-respected resource for patients and their families, contains a significant amount of health education content that is not appropriate for those with marginal health literacy. Editorial changes are needed to bring the information to suggested levels. Suggestions for developing appropriate materials are provided.

Knowledge of women's issues and epilepsy (KOWIE-II): a survey of health care professionals.

Attendees of the American College of Physicians 2003 annual meeting were invited to complete a computerized version of the Knowledge of Women's Issues and Epilepsy (KOWIE-II) questionnaire. This 10-item survey includes items specific to issues that affect women with epilepsy (WWE), including hormone sensitive seizures, effects of antiepileptic drugs (AEDs) on oral contraception, bone health, sexual function, pregnancy, and breast-feeding. A total of 202 healthcare providers (HCP) responded to the survey, 92% of which identified themselves as physicians. Few understood the effects of endogenous steroid hormones on seizure threshold (24%) and that epilepsy is associated with an increased incidence of female sexual dysfunction (37%). Most knew that enzyme-inducing AEDs may reduce the efficacy of oral contraceptives (71%) and that certain AEDs are associated with bone disease (77%). The majority were aware that most WWE have healthy children (86%), that women do not need to discontinue AEDs during pregnancy (75%), and that the most appropriate AED during pregnancy is one that best addresses the patient's seizures. Fewer than half (47%) of participants knew that women taking AEDs could breast-feed safely. This sample of HCPs was not adequately informed about the unique issues affecting WWE. An aggressive educational effort is necessary to close the gaps in knowledge.

Levetiracetam monotherapy during pregnancy: a case series.

The safety and efficacy of novel anticonvulsants during pregnancy in women with epilepsy are not well established. Although there are a variety of pregnancy registries accruing data on various outcomes, health care professionals managing women of childbearing age are interested in any information that may assist with clinical decisions. This case series summarizes the clinical outcomes of three women with epilepsy, all of whom took levetiracetam as monotherapy during pregnancy.