Enhancing the wellness of caregivers of individuals with epilepsy: The effects of a brief stress management course.

PURPOSE: To determine whether a brief stress management video can improve the quality of life of caregivers of persons with epilepsy (PWE). METHODS: Thirty-three adult caregivers of PWE who scored 5 or higher on the Caregiver Self-Assessment Questionnaire (CSAQ) completed a 30-min stress management video. This was preceded by a pre-intervention assessment, followed by post-intervention assessment at 1 month, and a delayed post-intervention assessment evaluation 3 months after video was viewed. Measures of program acceptability were also obtained. RESULTS: There was significant improvement when comparing pre- and post-intervention CSAQ scores. This improvement was sustained at 3 months post intervention. Measures of program acceptability were favorable. CONCLUSION: A brief stress management course can help improve the quality of life of caregivers of PWE.

The effects of a brief memory enhancement course on individuals with epilepsy.

PURPOSE: The purpose of the study was to determine whether a brief memory enhancement course in persons with epilepsy (PWE) can improve cognitive abilities, quality of life, self-management, and seizure severity. METHODS: Thirty-nine PWE completed a 1-hour memory enhancement course. This was preceded by a baseline/preintervention assessment (BA/PRE), followed by postintervention assessment (POST) at 1 & 1/2 to 3 months, and a delayed postintervention assessment evaluation (DPOST) at 4 & 1/2 to 6 months after course completion. In order to assess for retesting bias, an additional 30 PWE underwent a separate BA and PRE. RESULTS: There was significant improvement on the Patient-Reported Outcomes Patient Information System version 2.0 Cognitive Function Abilities Subset and the Epilepsy Self-Management Scale (ESMS) on both POST and DPOST when compared with BA/PRE. Retesting bias did not occur. On ESMS subscale evaluation, significant improvement occurred on the Lifestyle Management subscale. There was no improvement in quality of life and seizure severity. There was good patient acceptability for the memory program. CONCLUSION: A brief memory enhancement course results in sustained improvement in cognitive functioning and self-management of PWE.

Understanding the self-management skills of persons with epilepsy.

PURPOSE: To determine whether the self-management skills of persons with epilepsy (PWE) vary across the different domains of the Epilepsy Self-Management Scale (ESMS). METHODS: 172 PWE completed a survey questionnaire as well as the ESMS. RESULTS: Using ANOVA with pairwise comparison, the mean item scores of the medication, seizure, and safety management subscales of the ESMS were significantly higher than the lifestyle and information management subscales (p<0.01). The mean item score for the lifestyle management subscale was significantly higher than the information management subscale (p<0.01). CONCLUSION: PWE in our population performed differently across the various domains of the ESMS and did worse on the lifestyle and information management subscales. We discuss the implications of this on patient counseling and education.

Factors associated with increased felt stigma among individuals with epilepsy.

PURPOSE: The aim of the study is to determine whether certain demographic, clinical, and psychosocial traits are associated with higher levels of felt stigma among persons with epilepsy (PWE) patients followed at a level 4 epilepsy center. METHODS: We performed a direct survey of 182 consenting patients that included the Epilepsy Stigma Scale. RESULTS: On univariate analysis, higher levels of perceived stigma were associated with age, marital status, race, driving, work status, seizure etiology, Quality of Life in Epilepsy-10 (QOLIE-10) scores, and health literacy. Among coping reactions, the use of denial, behavioral disengagement and venting were also associated with higher degrees of felt stigma. Using multiple linear regression, being single, poorer QOLIE-10 scores, difficulties understanding written information, and the use of behavioral disengagement were independently associated with poorer scores on the Epilepsy Stigma Scale. CONCLUSION: Our study paints a compelling profile of a PWE who has greater perceived stigma. Programs that increase the level of social support, improve health literacy, and enhance quality of life may also help decrease the amount of felt stigma among PWE.

In focus: The everyday lives of families of adult individuals with epilepsy.

Epilepsy is a multifaceted chronic neurological disorder with diverse effects on a patient's psychosocial well-being. The impact on quality of life has been well documented, and many studies have addressed the detrimental influences epilepsy has on an individual. However, the emotional impact and the influence of the condition on family members have not been well studied. Furthermore, the majority of the studies on this topic have been confined to childhood epilepsy, and there is only scarce literature that discusses the effects on family members caring for adult patients. The purpose of this literature review was to examine the influence of adult epilepsy on the psychological and social well-being of individual family members. We explored the psychological and physical well-being, satisfaction with social circumstances, and perceived level of support in families of adult patients with intractable epilepsy. The paper also suggests best practices on how to improve the family's quality of life, as well as future directions for research. Superior medical care and a positive family support system are important conditions that can help adult individuals with epilepsy best deal with their condition.

Factors associated with superior self-management skills among individuals with epilepsy.

PURPOSE: This study aimed to determine whether the self-management skills of patients with epilepsy are associated with certain demographic, clinical, and psychosocial variables. METHODS: A direct survey of 182 patients, including the Epilepsy Self-Management Scale, was conducted. RESULTS: On univariate analysis, higher age, the occurrence of convulsions, and the use of religion as a coping mechanism were associated with higher self-management scores. On multiple linear regression, only age and the presence of convulsions remained independently significant. Older individuals employed more medication management skills. Those who experienced convulsions utilized more information management, seizure management, and lifestyle management skills. However, using binary logistic regression, we found that these subscales were not independently significant. The presence of superior self-management skills did not necessarily translate into decreased seizure frequency. CONCLUSION: Individuals with epilepsy who are older and experience convulsions generally have better self-management skills. This indicates that antecedents influence the development of self-management skills.

The societal integration of individuals with epilepsy: perspectives for the 21st century.

Epilepsy is a common neurologic disorder seen throughout the world. Advances in therapy have made it possible for persons with epilepsy (PWEs) to have improved seizure control and a better quality of life. However, it is not entirely clear whether this has resulted in their successful integration into society. This review examines the societal integration of PWEs, identifying both the progress made and the challenges that continue to hamper further advances. In general, PWEs are more integrated in western-oriented cultures. However, there continue to be ongoing difficulties due to poor education and intellectual functioning, poor social and family support, the undertreatment of coexisting psychiatric conditions, transportation and mobility limitations, and problems obtaining employment. This review also discusses the effects of low socioeconomic status on integration and the persisting prejudices that affect certain racial groups. Most importantly, this review underscores the fact that societal stigma towards PWEs is still very much alive. At the beginning of the 21st century, PWEs still encounter difficulties in their quest for full societal integration. Along with medical advances being made to improve seizure control, much still has to be done to bring about the reforms necessary to help PWEs live more meaningful and productive lives.

Racial differences in coping strategies among individuals with epilepsy.

PURPOSE: The purpose of this study was to determine whether racial differences exist in the coping styles of individuals with epilepsy. METHODS: This study utilized a survey of patients with epilepsy, including the Brief-COPE. RESULTS: One hundred thirteen Caucasians and 70 African-Americans comprised the study population. On univariate analysis, annual household income (p<0.01), receiving disability benefits (p<0.01), and number of AEDs being currently used (p=0.04) significantly distinguished Caucasians from African-Americans. African-Americans reported higher utilization of religion (p<0.01), denial (p<0.01), emotional support (p=0.02), positive reframing (p<0.01), and planning (p<0.01) as coping reactions compared to Caucasians. Using ordinal logistic regression, the association between being African-American and the higher utilization of religion, positive reframing, planning, and denial as coping strategies remained statistically significant. CONCLUSION: Among individuals with epilepsy, African-Americans appear to utilize more engagement-type coping reactions when compared to Caucasians but also utilize more denial.

Analyzing depression coping strategies of patients with epilepsy: a preliminary study.

PURPOSE: To determine whether individuals with epilepsy who are depressed have different coping reactions, such as increased use of disengagement-type coping reactions, compared to those who are not. METHODS: We surveyed 200 patients with epilepsy and obtained demographic and clinical information. We used the Neurological Institute Disorders Depression Inventory for Epilepsy (NIDDI-E) to determine those patients who had a major depression (NIDDI-E score >15) and administered the Quality of Life in Epilepsy-10 Inventory (QOLIE-10), Beliefs About Medicines Questionnaire-Specific, Sheehan Disability Scale, a screening question for health literacy ("How confident are you filling out medical forms by yourself?"), and the Brief Coping with Problems Experienced (Brief-COPE). Using univariate analysis, we determined those demographic and clinical variables that were associated with depression. We also determined the coping reactions more frequently utilized by individuals with depression, and using multivariate analysis, determined whether those coping reactions retained statistical significance. We performed subgroup analysis of depressed epilepsy patients to determine whether coping reactions they preferentially utilized were associated with seizure frequency and quality of life. RESULTS: Seventy-one patients had a major depression while 128 did not. On univariate analysis, not driving, not working, higher seizure frequency, experiencing convulsions, poorer quality of life, and higher disability scores were significantly associated with major depression. These individuals used denial more often as a coping reaction. On multiple linear regression, the association between the use of denial and being depressed retained statistical significance. The mean denial coping scores were higher among depressed patients with more frequent seizures. However, this did not reach statistical significance. CONCLUSION: Individuals with epilepsy who have a major depression utilize denial more often as a coping reaction. Realizing this is of value to caregivers as they help patients deal with their stressful situation. This also provides additional impetus to more effectively and aggressively treatment depression in the epilepsy population.

Determining the coping strategies of individuals with epilepsy.

PURPOSE: The purpose of the present study was to determine whether the coping styles of patients with epilepsy are associated with certain demographic, clinical, and psychosocial variables. METHODS: A survey of 200 patients using several tests including the Brief-COPE was conducted. RESULTS: Nine subscales of the Brief-COPE achieved acceptable internal consistency and were employed in study analysis. Using principal component analysis, six subscales correlated well with one another, representing engagement-type coping strategies. The other three also correlated well, representing disengagement-type strategies. As a group, our patients favored engagement-type strategies. On univariate analysis, increased age, being African-American, receiving disability benefits, and work status were associated with the use of engagement-type strategies, while on multiple linear regression, only age and race were independently associated. Low BMQ-S scores, low income level, and not driving were associated with the use of disengagement-type strategies both on univariate and multivariate analyses. CONCLUSION: Among patients with epilepsy, certain demographic and psychosocial variables are associated with particular coping styles.

Effects of antiepileptic drug characteristics on medication adherence.

PURPOSE: To determine whether antiepileptic drug (AED) characteristics are associated with medication adherence. METHODS: We reviewed pharmacy and clinical records of 108 patients with epilepsy from the indigent care program at Shands-Jacksonville. We calculated the mean medication possession ratio (MMPR) for each AED. Using univariate analysis, we determined whether differences exist in the MMPR of various AEDs. We also determined whether the MMPR differs accordingly to the use of mono- or combination therapy, dosing frequency, release-type, or brand-name formulation. We employed multivariable analysis to determine if these differences persisted in the context of other demographic and clinical variables. RESULTS: Mean medication possession ratio was higher (better) when using older AEDs, in monotherapy, and with more frequent dosing intervals. These variables remained significant on multivariable analysis. CONCLUSION: Our findings contradict some commonly held beliefs on medication adherence and suggest that specific AED characteristics may be superseded by factors such as overall patient satisfaction with the drug regimen.