Erica K. Johnson

The Relative Impact of Anxiety, Depression, and Clinical Seizure Features on Health‐related Quality of Life in Epilepsy

Summary:  Purpose: To determine the independent effects of depression and anxiety on health‐related quality of life (HRQOL) in epilepsy as well as the relative explanatory power of psychiatric comorbidity compared with demographic and clinical epilepsy variables (e.g., seizure frequency, severity, and chronicity).

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.

Expanding the Efficacy of Project UPLIFT: Distance Delivery of Mindfulness-based Depression Prevention to People with Epilepsy

OBJECTIVE Depression affects about 16% of the U.S. population over a lifetime. People with chronic diseases have especially high rates of comorbid depression; 32% to 48% of people with epilepsy experience depression. This study evaluated the efficacy of a mindfulness-based cognitive therapy intervention for preventing major depressive disorder (MDD) episodes in people with epilepsy. METHOD Participants (n = 128) were adults from Georgia, Michigan, Texas, and Washington with epilepsy and mild/moderate depressive symptoms. The 8-session weekly Project UPLIFT intervention, based on mindfulness-based cognitive therapy, was group-delivered via Web or telephone. Using a randomized, controlled crossover design, participants were assigned to Project UPLIFT or a treatment-as-usual (TAU) waitlist and assessed at baseline, and after intervening in the intervention group (∼10 weeks) and in the TAU group (∼20 weeks). Assessments included valid self-report measures of depression and MDD, knowledge/skills, and satisfaction with life. RESULTS The incidence of MDD episodes (new or relapse) from baseline to interim assessment was significantly lower in the intervention condition (0.0%) than in TAU (10.7%). Depressive symptoms decreased significantly more in the intervention condition than in TAU; Web and telephone did not differ. Change in knowledge/skills mediated the effect, which persisted over the 10 weeks of follow-up. Knowledge/skills and life satisfaction increased significantly more in the intervention condition than in TAU. CONCLUSIONS Distance delivery of group mindfulness-based cognitive therapy can prevent episodes of MDD, reduce symptoms of depression, and increase life satisfaction in people with epilepsy. This intervention is easily modified for persons with other chronic diseases and other disparity populations. (PsycINFO Database Record

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.

Measuring Clinical Significance in Rehabilitation Research.

Measurement of clinically significant change is critical for rehabilitation research because it can enhance the credibility of rehabilitation efforts and guide evidence-based practices. The practical appeal of clinically significant change is that it can bridge research and clinical practice by focusing on individual rather than group differences. In response to current challenges in rehabilitation outcome measurement, the authors describe methods and strategies for the analysis of clinically significant change. The complementary approaches of reliable change index scores as proposed by Jacobson and Truax (1991) and regression-based z scores as proposed by McSweeney, Naugle, Chelune, and Luders (1993) are highlighted. The article concludes with a case example and discussion of implications for future directions in rehabilitation research.

Self-management in epilepsy: Why and how you should incorporate self-management in your practice

Sandra L. Helmersa, Rosemarie Kobaub,*, Martha Sajatovicc, Barbara C. Jobstd, Michael Priviterae, Orrin Devinskyf, David Labinerg, Cam Escofferya, Charles E. Begleyh, Ross Shegogh, Dilip Pandeyi, Robert T. Fraserj, Erica K. Johnsonj, Nancy J. Thompsona, and Keith J. Horvathk for the Centers for Disease Control and Prevention Managing Epilepsy Well Network aEmory University, Atlanta, GA bCenters for Disease Control and Prevention, Epilepsy Program, Atlanta, GA cCase Western Reserve University, Cleveland, OH dDartmouth Hitchcock Epilepsy Center, Lebanon, NH eUniversity of Cincinnati, Cincinnati, OH fUniversity of New York, New York, NY gArizona, Tucson, AZ hUniversity of TX, Houston, TX iUniversity of Illinois, Chicago, IL jUniversity of Washington, Seattle, WA kUniversity of Minnesota, Minneapolis, MN

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.

Psychosocial Adjustment and Coping in the Post-conflict Setting

Individual and collective responses to trauma influence the way scholars and clinicians think about the stress response and the survivor network. Stress-coping concepts are integral to the manner in which individuals and communities cope with trauma in post-conflict societies. The salience of social support and psychological resilience, as additional concepts through which work with survivors can be approached, offer opportunities for facilitative intervention. This chapter provides a review of the literature addressing individual and collective responses to trauma, and non-adaptive responses to trauma such as stress, anxiety, and mood disorders. This chapter also provides a review of current concepts related to coping and social support and the manner in which these concepts have been characterized in post-conflict settings. Finally, this chapter concludes with considerations of the manner in which the concepts of individual and communal resilience relate to the trauma membrane and encourage thinking about capacity building that supports a healing environment for those in post-conflict societies.

Measurement in pediatric epilepsy self-management: A critical review

Given the paucity of information available regarding self‐management, the aims of this paper are to synthesize the literature on factors associated with and measures to assess self‐management in pediatric epilepsy. Inclusion criteria: youth birth to 18 years with a seizure disorder or an epilepsy diagnosis and/or their caregivers, published 1985‐2014 in English, and conducted in countries with a very high human development index. The review was conducted in 6 phases: (1) identification of bibliographical search criteria and databases; (2) abstract assessment; (3) full article review; (4) organization of final citations into categories; (5) identification of predictors, potential mediators/moderators, and outcomes associated with self‐management factors and categorization of factors as influences, processes, or behaviors across individual, family, community, and health care domains; and (6) critique of self‐management instrument studies. Twenty‐five studies that evaluated factors associated with self‐management were identified. Individual and family‐focused factors were the most commonly studied predictors of self‐management, with psychosocial care needs and self‐efficacy for seizure management identified as key factors associated with pediatric epilepsy self‐management. Few studies have included mediator and moderator analyses. Measures of adherence were the most commonly used outcome. There has been a predominant focus on pediatric epilepsy influences and processes that are modifiable in nature, potentially at the expense of evidence for the role of community and health systems in pediatric epilepsy self‐management. The 6 self‐management instrument tools reported scientific rationale and good psychometric properties. Results highlight several key modifiable cognitive and behavioral targets for skills development: adherence, self‐efficacy for seizure management, attitudes toward epilepsy, and family variables. Moving forward, a comprehensive pediatric epilepsy self‐management model, well‐validated measures of self‐management behaviors, mediator/moderator designs to examine the complex relationships between predictors and pediatric epilepsy self‐management outcomes, and studies examining the community and health care domains of self‐management are necessary.

Demographic and Clinical Correlates of Seizure Frequency: Findings from the Managing Epilepsy Well Network Database

Background and Purpose Epilepsy is a chronic neurological disease that represents a tremendous burden on both patients and society in general. Studies have addressed how demographic variables, socioeconomic variables, and psychological comorbidity are related to the quality of life (QOL) of people with epilepsy (PWE). However, there has been less focus on how these factors may differ between patients who exhibit varying degrees of seizure control. This study utilized data from the Managing Epilepsy Well (MEW) Network of the Centers for Disease Control and Prevention with the aim of elucidating differences in demographic variables, depression, and QOL between adult PWE. Methods Demographic variables, depression, and QOL were compared between PWE who experience clinically relevant differences in seizure occurrence. Results Gender, ethnicity, race, education, income, and relationship status did not differ significantly between the seizure-frequency categories (p>0.05). People with worse seizure control were significantly younger (p=0.039), more depressed (as assessed using the Patient Health Questionnaire) (p=0.036), and had lower QOL (as determined using the 10-item Quality of Life in Epilepsy for Adults scale) (p<0.001). Conclusions The present results underscore the importance of early screening, detection, and treatment of depression, since these factors relate to both seizure occurrence and QOL in PWE.