Patricia Osborne Shafer

Practice Parameter: Evaluating an apparent unprovoked first seizure in adults (an evidence-based review) Report of the Quality Standards Subcommittee of the American Academy of Neurology and the American Epilepsy Society

Objective:The Quality Standards Subcommittee of the American Academy of Neurology develops practice parameters as strategies for patient care based on analysis of evidence. For this practice parameter the authors reviewed available evidence relevant to evaluating adults presenting with an apparent unprovoked first seizure. Methods:Relevant questions were defined and addressed by multiple searches of medical literature. Each article was then reviewed, abstracted, and classified using an established evidence scoring system. Conclusions and recommendations were based on a standard three-tiered scheme of evidence classification. Results:For adults presenting with a first seizure, a routine EEG revealed epileptiform abnormalities in approximately 23% of patients, and these were predictive of seizure recurrence. A brain imaging study (CT or MRI) was significantly abnormal in 10% of patients, indicating a possible seizure etiology. Laboratory tests such as blood counts, blood glucose, and electrolyte panels were abnormal in up to 15% of individuals, but abnormalities were minor and did not cause the seizure. Overt clinical signs of infection such as fever typically predicted significant CSF abnormalities on lumbar puncture. Toxicology screening studies were limited, but report some positive tests. Recommendations:EEG should be considered as part of the routine neurodiagnostic evaluation of adults presenting with an apparent unprovoked first seizure (Level B). Brain imaging with CT or MRI should be considered as part of the routine neurodiagnostic evaluation of adults presenting with an apparent unprovoked first seizure (Level B). Laboratory tests, such as blood counts, blood glucose, and electrolyte panels (particularly sodium), lumbar puncture, and toxicology screening may be helpful as determined by the specific clinical circumstances based on the history, physical, and neurologic examination, but there are insufficient data to support or refute recommending any of these tests for the routine evaluation of adults presenting with an apparent first unprovoked seizure (Level U).

Epilepsy in North America: A Report Prepared under the Auspices of the Global Campaign against Epilepsy, the International Bureau for Epilepsy, the International League Against Epilepsy, and the World Health Organization

Summary:  In North America, overall epilepsy incidence is approximately 50/100,000 per year, highest for children below five years of age, and the elderly. The best data suggest prevalence of 5–10/1000. Potential effects of gender, ethnicity, access to care and socioeconomic variables need further study. Studies of epilepsy etiology and classification mainly were performed without modern imaging tools. The best study found an overall standardized mortality ratio (SMR) for epilepsy relative to the general population of 2.3. There is evidence to suggest a greater increase in patients with symptomatic epilepsy, particularly children. People with epilepsy are more likely to report reduced Health‐related Quality of Life than controls. They have reduced income, and are less likely to have full‐time employment. They suffer from persistent stigma throughout the region, in developed as well as developing countries. Poor treatment access and health care disparities for people with epilepsy may be related to insufficient economic resources, rural isolation, gender, ethnicity, and lack of public and physician knowledge of modern approaches to epilepsy care. Despite high costs and severe disability, epilepsy may attract somewhat less research funding from public and private sources than other less common chronic neurological disorders. A Plan for Epilepsy in North America should address: basic and clinical research; primary prevention research; translation to care; stigma, quality of life, and self‐management; industry relations; government and regional relations; and regional integration and resource sharing.

Epilepsy familiarity, knowledge, and perceptions of stigma: report from a survey of adolescents in the general population

The Epilepsy Foundation surveyed general population adolescents concerning epilepsy. From March to July 2001, a 37-item questionnaire was distributed by 20 Epilepsy Foundation affiliates to high school students. The final sample was 19,441. Data were analyzed using descriptive statistics. Only about half (52%) remembered hearing about epilepsy. Most (67%) were not sure what to do if someone had a seizure. About three-fourths believed that youth with epilepsy were or might be more likely to get bullied or picked on than others. Less than a third (31%) would date a person with epilepsy. Results indicate that the social environment for adolescents with epilepsy is characterized by stigma and lack of familiarity and knowledge about epilepsy. Findings strongly support the need for public education for general population adolescents to increase knowledge and awareness to decrease the stigma associated with epilepsy.

Practice Parameter update: Management issues for women with epilepsy—Focus on pregnancy (an evidence-based review): Vitamin K, folic acid, blood levels, and breastfeeding Report of the Quality Standards Subcommittee and Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and American Epilepsy Society

Objective: To reassess the evidence for management issues related to the care of women with epilepsy (WWE) during pregnancy, including preconceptional folic acid use, prenatal vitamin K use, risk of hemorrhagic disease of the newborn, clinical implications of placental and breast milk transfer of antiepileptic drugs (AEDs), risks of breastfeeding, and change in AED levels during pregnancy. Methods: A 20-member committee evaluated the available evidence based on a structured literature review and classification of relevant articles published between 1985 and October 2007. Results: Preconceptional folic acid supplementation is possibly effective in preventing major congenital malformations in the newborns of WWE taking AEDs. There is inadequate evidence to determine if the newborns of WWE taking AEDs have a substantially increased risk of hemorrhagic complications. Primidone and levetiracetam probably transfer into breast milk in amounts that may be clinically important. Valproate, phenobarbital, phenytoin, and carbamazepine probably are not transferred into breast milk in clinically important amounts. Pregnancy probably causes an increase in the clearance and a decrease in the concentration of lamotrigine, phenytoin, and to a lesser extent carbamazepine, and possibly decreases the level of levetiracetam and the active oxcarbazepine metabolite, the monohydroxy derivative. Recommendations: Supplementing women with epilepsy with at least 0.4 mg of folic acid before they become pregnant may be considered (Level C). Monitoring of lamotrigine, carbamazepine, and phenytoin levels during pregnancy should be considered (Level B) and monitoring of levetiracetam and oxcarbazepine (as monohydroxy derivative) levels may be considered (Level C). A paucity of evidence limited the strength of many recommendations.

The association of stigma with self-management and perceptions of health care among adults with epilepsy

OBJECTIVE The purpose of this study was to examine the perception of stigma among adults with epilepsy including its association with epilepsy self-management and perceptions of health care. METHODS Participants for the study were recruited from two epilepsy centers and a neurology clinic. Individuals agreeing to participate in the study were asked to complete three assessments each 3 months apart. Data were collected from 320 adult men and women with epilepsy; 314 provided responses on stigma and were included in this analysis. RESULTS Participants ranged in age from 19 to 75 years (mean=43). Fifty percent of the sample was female, and 80% was white. The mean age of seizure onset was 22 years, and 76% of participants reported having had a seizure within the past year. Analysis suggests levels of perceived stigma are similar for men and women and across ethnic and age groups. However, participants who were not married or living with a partner, were not working for pay, and had limited income reported higher levels of stigma than did married participants, those working for pay, and those in higher income brackets. Participants reporting higher levels of stigma included those who had their first seizure before the age of 50 and a seizure in the last year. Participants whose seizures interfered more with activities, who rated their seizures as under less control, and who were not legally able to drive also reported higher levels of stigma. Tests of association between stigma and health-related variables revealed that participants reporting higher levels of perceived stigma also reported lower levels of self-efficacy to manage epilepsy; more negative outcome expectancies related to treatment and seizures; and lower levels of medication management, medication adherence, and patient satisfaction. However, they also reported greater management of information related to seizures. In regression analysis, income, age at first seizure, seizures during the past year, lower self-efficacy, negative outcome expectancies for seizures, and less patient satisfaction explained 54% of the variance in perceived stigma. CONCLUSIONS The results of the study suggest that perceived stigma is significant for people with epilepsy and is associated with factors that are known to be important in the management of epilepsy. Understanding who is at greatest risk for feeling stigmatized could lead to the development of preventive measures.

Management issues for women with epilepsy—Focus on pregnancy (an evidence-based review): III. Vitamin K, folic acid, blood levels, and breast-feeding Report of the Quality Standards Subcommittee and Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology and the American Epilepsy Society

A committee assembled by the American Academy of Neurology (AAN) reassessed the evidence related to the care of women with epilepsy (WWE) during pregnancy, including preconceptional folic acid and prenatal vitamin K use and the clinical implications of placental and breast‐milk transfer of antiepileptic drugs (AEDs). The committee evaluated the available evidence based on a structured literature review and classification of relevant articles. Preconceptional folic acid supplementation is possibly effective in preventing major congenital malformations in the newborns of WWE taking AEDs. There is inadequate evidence to determine if the newborns of WWE taking AEDs have a substantially increased risk of hemorrhagic complications. Primidone and levetiracetam probably transfer into breast milk in clinically important amounts. Valproate, phenobarbital, phenytoin, and carbamazepine probably are not transferred into breast milk in clinically important amounts. Pregnancy probably causes an increase in the clearance and a decrease in the concentrations of lamotrigine, phenytoin, and, to a lesser extent carbamazepine, and possibly decreases the level of levetiracetam and the active oxcarbazepine metabolite, the monohydroxy derivative (MHD). Supplementing WWE with at least 0.4 mg of folic acid before pregnancy may be considered. Monitoring of lamotrigine, carbamazepine, and phenytoin levels during pregnancy should be considered, and monitoring of levetiracetam and oxcarbazepine (as MHD) levels may be considered. A paucity of evidence limited the strength of many recommendations.

Project EASE: a study to test a psychosocial model of epilepsy medication management

The purpose of this study was to test a psychosocial model of medication self-management among people with epilepsy. This model was based primarily on social cognitive theory and included personal (self-efficacy, outcome expectations, goals, stigma, and depressive symptoms), social (social support), and provider (patient satisfaction and desire for control) variables. Participants for the study were enrolled at research sites in Atlanta, Georgia, and Boston, Massachusetts and completed computer-based assessments that included measures of the study variables listed above. The mean age of the 317 participants was 43.3 years; about 50% were female, and 81%white. Self-efficacy and patient satisfaction explained the most variance in medication management. Social support was related to self-efficacy; stigma to self-efficacy and depressive symptoms; and self-efficacy to outcome expectations and depressive symptoms. Findings reinforce that medication-taking behavior is affected by a complex set of interactions among psychosocial variables.

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.

The epilepsy medication and treatment complexity index: reliability and validity testing.

&NA; Medications are the most common treatment for epilepsy. Regimens vary from once per day dosing to several pills several times per day. More complex regimens have been associated with lower adherence rates. To date, medication complexity has been measured by the number of pills and the number of times per day the pills are taken. However, complexity also includes special instructions (e.g., take at a separate time than other medications) and the specific administration actions (e.g., take 1/2 pill). This article describes the development of an instrument designed to measure the complexity associated with epilepsy treatment regimens. The medication complexity tool (MCI) was modified to create the Epilepsy Medication and Treatment Complexity Index (EMTCI). The EMTCI comprises four sections: (a) general medication information, (b) frequency of administration, (c) special instructions, and (d) administration actions. Points are given for dosing schedules, special instructions, and administration actions. A total complexity score is calculated by adding points for each section. One form is completed for each medication prescribed for each person. The initial development of the EMTCI included revising the MCI to make it applicable to epilepsy medications. Interrater and intrarater reliability assessments were conducted. The EMTCI was administered to adults with epilepsy as part of a larger study of self‐management in people with epilepsy. Data from that study were used for further assessments of the EMTCI including test‐retest reliability, criterion validity, and construct validity. The EMTCI shows evidence of both reliability and validity. Information from the tool can be used to describe the medication complexity of epilepsy medication regimens in much greater detail than has been done previously for this population. This information is useful in describing the treatment and adherence issues for persons with epilepsy.

Research implications of the Institute of Medicine Report, Epilepsy Across the Spectrum: Promoting Health and Understanding

In March 2012 the Institute of Medicine (IOM) released the report, Epilepsy Across The Spectrum: Promoting Health and Understanding. This report examined the public health dimensions of the epilepsies with a focus on the following four areas: public health surveillance and data collection and integration; population and public health research; health policy, health care, and human services; and education for providers, people with epilepsy and their families, and the public. The report provided recommendations and research priorities for future work in the field of epilepsy that relate to increasing the power of data on epilepsy; prevention of epilepsy; improving health care for people with epilepsy; improving health professional education about epilepsy; improving quality of life for people with epilepsy; improving education about epilepsy for people with epilepsy and families; and raising public awareness about epilepsy. For this article, the authors selected one research priority from each of the major chapter themes in the IOM report: expanding and improving the quality of epidemiologic surveillance in epilepsy; developing improved interventions for people with epilepsy and depression; expanding early identification/screening for learning impairments in children with epilepsy; evaluating and promoting effective innovative teaching strategies; accelerating research on the identification of risk factors and interventions that increase employment and improve quality of life for people with epilepsy and their families; assessing the information needs of people with epilepsy and their families associated with epilepsy‐related risks, specifically sudden unexpected death in epilepsy; and developing and conducting surveys to capture trends in knowledge, awareness, attitudes, and beliefs about epilepsy over time and in specific population subgroups. For each research priority selected, examples of research are provided that will advance the field of epilepsy and improve the lives of people with epilepsy. The IOM report has many other research priorities for researchers to consider developing to advance the field of epilepsy and better the lives of people with epilepsy.