Self-management Studies

Completed

Improving Self-management Among Persons with Epilepsy
Principal investigator: Michael Pramuka, PhD
Western Psychiatric Institute and Clinic, University of Pittsburgh Medical School, Pittsburgh, PA

Purpose: to identify the impact of psychosocial interventions on the intrapersonal attributes and quality of life of adults with epilepsy.

Published Report:

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Current

Managing Epilepsy Well (MEW) Network for Epilepsy Self-Management
Coordinating Center: Emory University Prevention Research Center, Atlanta GA                                               
SIP 5-07, SIP 9-11

Principal Investigator: Colleen K. DiIorio,PhD, RN

Purpose: to advance the science related to epilepsy self-management by facilitating and implementing research, conducting research in collaboration with network and community stakeholders, and broadly disseminating the findings of research.  The MEW Coordinating Center provides direction and support to an applied research agenda among several MEW Network collaborating centers.

Information about the current activities at four MEW collaborating centers follows. 

Collaborating Center 1: Emory University

SIP 5-07, SIP 09-11: Evaluating the effectiveness of epilepsy self-management programs:   WebEase (Epilepsy Awareness, Support and Education)

Principal Investigators: Colleen K. DiIorio, PhD, RN  and Nancy Thompson, PhD
Projects: evaluations of the effectiveness of two epilepsy self-management interventions among older adolescents and adults: (1) WebEase (Epilepsy Awareness, Support and Education), a 6-week Internet-based program addressing medication, stress, and sleep management (Dr. DiIorio); and (2) Project UPLIFT (Using Practice and Learning to Increase favorable thoughts), an 8-week Internet- or telephone-based program to reduce depression (Dr. Thompson).

Published Reports:
DiIorio C, Escoffery C, Mccarty F, Yeager KA, Henry TR, Koganti A, Reisinger EL, Wexler B.  Evaluation of WebEase: an epilepsy self-management Web site.  Health Educ Res 2008 [Epub Aug 4; in press]

Escoffery C, Yeager KA, McCarty F, Henry TR, Koganti A, et al. WebEase: development of a Web-based epilepsy self-management intervention. Prev Chronic Dis 2009; 6(1). Accessed [March 11, 2009].

Escoffery C, DiIorio C, Yeager, KA, McCarty F, Robinson E, Reisinger E, Henry, TR, Koganti A. Use of computers and the Internet for health information by patients with epilepsy. Epilepsy & Behavior 2008; 12:109-14.

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Collaborating Center 2: University of WashingtonHealth Promotion Research Center, Seattle, WA

SIP 09-11:  A Consumer Generated Self-Management Model

Principal Investigator: Robert Fraser, PhD.
CRC (Co-Investigator/Project Coordinator): Erica Johnson, Ph.D.,
The proposed activities involve the development and randomized controlled trial of a consumer-driven epilepsy self-management program. Planning activities in sequence involved a review of existing self-management programs and formats for individuals with both chronic disease and more specifically epilepsy, the development of a needs assessment protocol that was used to further refine module material and format, and use of a sequence of focus groups for refinement of the intervention model. Additional epilepsy self-management survey research is ongoing and being used to better serve specific subgroups within the population (i.e., individuals with greater levels of anxiety or depression; or lower cognitive abilities). Other outcomes from research planning activity will be the identification of underused community resources that can be useful as part of the intervention, evaluation of health and behavioral outcome measures related to the intervention, and implementation of a translational approach for promoting use of the self-management model within the greater epilepsy community.

SIP 1-08:  Developing Community-Based Self-Management Programs for Adults with Epilepsy                                                                                                                                                                                                                           Principal Investigator:  Robert T. Fraser, PhD
Project: development of comprehensive planning in order to tailor an epilepsy self-management program specific to the medical and psychosocial needs experienced by people with epilepsy. 

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Collaborating Center 3: University of Michigan,Ann Arbor, MI

SIP 09-11 Enhancing Self Regulation and Social Support in Adults with Refractory Epilepsy

Principal Investigator: Noreen M Clark, PhD
Project Manager: Shelley Stoll, MPH
This study builds upon formative research conducted by Network members to develop and pilot a promising self management intervention for adults with refractory epilepsy. The intervention combines skill building for self regulation by people with refractory epilepsy; training for significant individuals providing social support to those with epilepsy; and provision of salient and focused materials and information to both. It is based on the principles of family psychoeducation, self regulation, and regimen-specific social support.  The program will be based outside the clinical setting to underscore the central role of individual and family (versus medical care system) in control and decision making regarding epilepsy management. The combination of structured opportunities to improve self regulation skills, social support from a strong community base, and telephone coaching have the potential to significantly affect epilepsy management.

The primary goal of evaluation is to describe the intervention in detail and examine the extent to which it can be implemented as planned, is accepted by participants, and produces a high level of engagement. Analysis of outcome measures is exploratory in that it will explore potentials and challenges in implementation of measures. Variables to be examined as potential outcomes include seizure frequency, quality of life, and health care utilization.

SIP 01-08 Contributing to Managing Epilepsy Well (CMEW)                                                                                                                                                                                                                  Principal Investigator: Noreen M. Clark, PhD
Project: a systematic review of the literature to: (1) identify both chronic disease and epilepsy self-management models, (2) identify relevant outcomes with which to assess the models, (3) suggest a self-management project based on the literature, and (4) develop plans to implement and test an intervention.  

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Collaborating Center 4: University of Texas at Houston

SIP 09-11 Decision-support for the clinical management of epilepsy

Principal Investigator: Charles Begley, PhD
Principal investigator: Ross Shegog, PhD
This two-year project will develop and test a clinic-based computer program to assist patients and their health care providers in communicating about the patient’s epilepsy self-management and to more effectively enhance this behavior. The computer-based program will be mounted on a palm-sized computer that is accessed by the patient and their provider during the regular clinic visit. Based on the patient’s symptoms with epilepsy, their behavior, and their thoughts and attitudes, the program will provide the patient and the provider with information of the patient’s self-management needs, recommendations on important discussion points for the clinic visit, patient management goals, and suggestions for a patient self-management ‘action plan’ subsequent to the clinic visit. The program will be tested to determine that it is a feasible adjunct to the epilepsy care.

SIP 01-08 Socioeconomic differences in epilepsy self-management and its impact on treatment adherence, healthcare use, and health outcomes

Principal Investigator: Charles E. Begley, PhD

Project: an examination of predictors of self-management behavior in epilepsy (attitudes, and social, behavioral, and environmental factors), and their associations with treatment adherence and health outcomes (e.g., ER visits, seizure control, quality of life, and functional status) in a 450-patient cohort from a sociodemographically diverse population of people with epilepsy.

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