Yvan Bamps

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.

The Prevention Research Centers’ Managing Epilepsy Well Network

The Managing Epilepsy Well (MEW) Network was created in 2007 by the Centers for Disease Control and Preventions (CDC) Prevention Research Centers and Epilepsy Program to promote epilepsy self-management research and to improve the quality of life for people with epilepsy. MEW Network membership comprises four collaborating centers (Emory University, University of Texas Health Science Center at Houston, University of Michigan, and University of Washington), representatives from CDC, affiliate members, and community stakeholders. This article describes the MEW Networks background, mission statement, research agenda, and structure. Exploratory and intervention studies conducted by individual collaborating centers are described, as are Network collaborative projects, including a multisite depression prevention intervention and the development of a standard measure of epilepsy self-management. Communication strategies and examples of research translation programs are discussed. The conclusion outlines the Networks role in the future development and dissemination of evidence-based epilepsy self-management programs.

Managing Epilepsy Well: Emerging e-Tools for epilepsy self-management

The Managing Epilepsy Well (MEW) Network was established in 2007 by the Centers for Disease Control and Prevention Epilepsy Program to expand epilepsy self-management research. The network has employed collaborative research strategies to develop, test, and disseminate evidence-based, community-based, and e-Health interventions (e-Tools) for epilepsy self-management for people with epilepsy, caregivers, and health-care providers. Since its inception, MEW Network collaborators have conducted formative studies (n=7) investigating the potential of e-Health to support epilepsy self-management and intervention studies evaluating e-Tools (n=5). The MEW e-Tools (the MEW website, WebEase, UPLIFT, MINDSET, and PEARLS online training) and affiliated e-Tools (Texting 4 Control) are designed to complement self-management practices in each phase of the epilepsy care continuum. These tools exemplify a concerted research agenda, shared methodological principles and models for epilepsy self-management, and a communal knowledge base for implementing e-Health to improve quality of life for people with epilepsy.

Social support for self-management behaviors among people with epilepsy: A content analysis of the WebEase program

Social support is an important component in managing epilepsy; however little is known about support provided to people with epilepsy. This study examined whom people with epilepsy identify as supportive, and how those individuals support people with epilepsys self-management efforts. Data come from the WebEase project, an effective online epilepsy self-management program. People with epilepsy who participated in the pilot (n=35) and efficacy trials (n=118) were included. A content analysis was conducted on responses to open-ended questions related to support. The majority of participants provided information about their supporters. The number of support providers ranged from 0 to 6, with about 12% indicating no support. Parents and significant others were most commonly listed as supporters. Support providers mainly offer emotional and instrumental support, reminders and aid for taking medication, and support for self-management strategies. These results could be useful for interventions aimed at bolstering support in order to improve self-management.

Development of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

Epilepsy self-management is the total sum of steps that people perform to maximize seizure control, to minimize the impact of having a seizure disorder, and to maximize quality of life. As part of a phased approach to instrument development, we conducted descriptive analyses of data from epilepsy self-management items covering 10 domains of self-management gathered from 422 adults with epilepsy from multiple study sites. Participants most frequently reported performing sets of behaviors related to managing treatment and stigma, information seeking, managing symptoms, and communicating with providers. Behaviors reported with lower frequency were related to seeking social support and engaging in wellness behaviors. Significant differences for the domains were found for income, gender, and education levels but not for other different demographic variables. A subsequent analytic phase, reported in a companion article, will use factor analysis to identify and validate the subscale structure of the domains.

Managing information well: Toward an ontology-driven informatics platform for data sharing and secondary use in epilepsy self-management research centers.

Epilepsy is a chronic neurological condition that requires active self-management to reduce personal and population burden. The Managing Epilepsy Well Network, funded by the US Centers for Disease Control and Prevention, conducts research on epilepsy self-management. There is an urgent need to develop an integrated informatics platform to maximize the secondary use of existing Managing Epilepsy Well Network data. We have implemented multiple steps to develop an informatics platform, including: (a) a survey of existing outcome data, (b) identification of common data elements, and (c) an integrated database using an epilepsy domain ontology to reconcile data heterogeneity. The informatics platform enables assessment of epilepsy self-management samples by site and in aggregate to support data interpretations for clinical care and ongoing epilepsy self-management research. The Managing Epilepsy Well informatics platform is expected to help advance epilepsy self-management, improve health outcomes, and has potential application in other thematic research networks.

Factor analyses of an Adult Epilepsy Self-Management Measurement Instrument (AESMMI).

The purpose of this study was to test the psychometric properties of an enhanced Adult Epilepsy Self-Management Measurement Instrument (AESMMI). An instrument of 113 items, covering 10 a priori self-management domains, was generated through a multiphase process, based on a review of the literature, validated epilepsy and other chronic condition self-management scales and expert input. Reliability and exploratory factor analyses were conducted on data collected from 422 adults with epilepsy. The instrument was reduced to 65 items, converging on 11 factors: Health-care Communication, Coping, Treatment Management, Seizure Tracking, Social Support, Seizure Response, Wellness, Medication Adherence, Safety, Stress Management, and Proactivity. Exploratory factors supported the construct validity for 6 a priori domains, albeit with significant changes in the retained items or in their scope and 3 new factors. One a priori domain was split in 2 subscales pertaining to treatment. The configuration of the 11 factors provides additional insight into epilepsy self-management behaviors. Internal consistency reliability of the 65-item instrument was high (α=.935). Correlations with independent measures of health status, quality of life, depression, seizure severity, and life impact of epilepsy further validated the instrument. This instrument shows potential for use in research and clinical settings and for assessing intervention outcomes and self-management behaviors in adults with epilepsy.

Self-management interventions in pediatric epilepsy: What is the level of evidence?

To respond to recommendations put forth by the Institute of Medicine to improve self‐management resources for youth with epilepsy by conducting a systematic review of the self‐management literature in pediatric epilepsy.

Comparison of common data elements from the Managing Epilepsy Well (MEW) Network integrated database and a well-characterized sample with nonepileptic seizures

INTRODUCTION Epilepsy and psychogenic nonepileptic seizures (PNES) are both chronic illnesses characterized by similar and overlapping clinical features. A limited number of studies comparing people with epilepsy (PWE) and patients with PNES that address determinants of health outcomes exist. We conducted an analysis using a well-characterized sample of people with PNES and the Managing Epilepsy Well (MEW) Network integrated data, comparing descriptive data on samples with epilepsy and with documented PNES. Based on the pooled data, we hypothesized that people with PNES would have worse QOL and higher depression severity than PWE. MATERIAL AND METHODS We used data from the MEW Network integrated database involving select epilepsy self-management studies comprising 182 PWE and 305 individuals with documented PNES from the Rhode Island Hospital Neuropsychiatry and Behavioral Neurology Clinic. We conducted a matched, case-control study assessing descriptive comparisons on 16 common data elements that included gender, age, ethnicity, race, education, employment, income, household composition, relationship status, age at seizure onset, frequency of seizures, seizure type, health status, healthy days, quality of life, and depression. Standardized rating scales for depression and quality of life were used. RESULTS Median seizure frequency in the last 30days for PWE was 1, compared to 15 for patients with PNES (p<0.05). People with epilepsy had a QOLIE-10 mean score of 3.00 (SD: 0.91) compared to 3.54 (0.88) (p<0.01) for patients with PNES. Depression severity was moderate to severe in 7.7% of PWE compared to 34.1% (p<0.05) of patients with PNES. DISCUSSION People with epilepsy in selected MEW Network programs are fairly well educated, mostly women, with few minorities and low monthly seizure rates. Those with PNES, however, have higher levels of not working/on disability and had more frequent seizures, higher depression severity, and worse QOL. These differences were present despite demographics that are largely similar in both groups, illustrating that other determinants of illness may influence PNES.

Correlates of quality of life among individuals with epilepsy enrolled in self-management research: From the US Centers for Disease Control and Prevention Managing Epilepsy Well Network

RATIONALE Epilepsy is a chronic neurological condition that causes substantial burden on patients and families. Quality of life may be reduced due to the stress of coping with epilepsy. For nearly a decade, the Centers for Disease Control (CDC) Prevention Research Centers Managing Epilepsy Well (MEW) Network has been conducting research on epilepsy self-management to address research and practice gaps. Studies have been conducted by independent centers across the U.S. Recently, the MEW Network sites, collaboratively, began compiling an integrated database to facilitate aggregate secondary analysis of completed and ongoing studies. In this preliminary analysis, correlates of quality of life in people with epilepsy (PWE) were analyzed from pooled baseline data from the MEW Network. METHODS For this analysis, data originated from 6 epilepsy studies conducted across 4 research sites and comprised 459 PWE. Descriptive comparisons assessed common data elements that included gender, age, ethnicity, race, education, employment, income, seizure frequency, quality of life, and depression. Standardized rating scales were used for quality of life (QOLIE-10) and for depression (Patient Health Questionnaire, PHQ-9). RESULTS While not all datasets included all common data elements, baseline descriptive analysis found a mean age of 42 (SD 13.22), 289 women (63.0%), 59 African Americans (13.7%), and 58 Hispanics (18.5%). Most, 422 (92.8%), completed at least high school, while 169 (61.7%) were unmarried, divorced/separated, or widowed. Median 30-day seizure frequency was 0.71 (range 0-308). Depression at baseline was common, with a mean PHQ-9 score of 8.32 (SD 6.04); 69 (29.0%) had depression in the mild range (PHQ-9 score 5-9) and 92 (38.7%) had depression in the moderate to severe range (PHQ-9 score >9). Lower baseline quality of life was associated with greater depressive severity (p<.001), more frequent seizures (p<.04) and lower income (p<.05). CONCLUSIONS The MEW Network Integrated Database offers a unique opportunity for secondary analysis of data from multiple community-based epilepsy research studies. While findings must be tempered by potential sample bias, i.e. a relative under-representation of men and relatively small sample of some racial/ethnic subgroups, results of analyses derived from this first integrated epilepsy self-management database have potential to be useful to the field. Associations between depression severity and lower QOL in PWE are consistent with previous studies derived from clinical samples. Self-management efforts that focus on mental health comorbidity and seizure control may be one way to address modifiable factors that affect quality of life in PWE.