Lucretia Long

An Assessment of Epilepsy Patients' Knowledge of Their Disorder

Summary: Purpose: Patient education is an effective component of comprehensive care. Studies assessing patients knowledge of their epilepsy are scarce. We report the first objective study evaluating knowledge of epilepsy patients referred to an American tertiary care center.

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.

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.

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.

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 Womens 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 patients 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.

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.

The validity and reliability of the Knowledge of women's Issues and epilepsy (KOWIE) Questionnaires I and II

The Knowledge of Womens 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.

THE PRACTICAL ASPECTS OF EPILEPSY : CRITICAL COMPONENTS OF COMPREHENSIVE PATIENT CARE

&NA; Patients with epilepsy are often exposed to difficult social dilemmas, some of which may be more challenging than the actual seizure. Although all patients with chronic conditions experience social hardships, the epileptic patient may be at greater risk for social difficulties. Due to unjust restrictions and an overall lack of emphasis on psychosocial matters, patients with epilepsy may be wrongfully denied participation in routine activities. These patients may also lack an understanding of appropriate prevention measures related to self injury. Appropriate restrictions for patients with epilepsy include driving and selected extra‐curricular activities. The home environment is particularly dangerous for epilepsy patients. Other social issues for epilepsy patients include suicide attempts, employment and alcohol consumption.

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.