viernes, 4 de julio de 2014

CDC - Epilepsy - Research Projects - Self-Management Studies

CDC - Epilepsy - Research Projects - Self-Management Studies

Self-Management Studies

Managing Epilepsy Well NetworkManaging Epilepsy Well (MEW) Network (Established in 2007)
Purpose: To advance the science on epilepsy self-management by conducting high-quality research across a network of universities that promotes self-management and quality of life; collaborating with MEW Network and community stakeholders to implement activities; and broadly disseminating research findings. The MEW Network addresses the Living Well with Epilepsy (2003) Adobe PDF file [PDF-1.6Mb] priority recommendations, and the Institute of Medicine “Epilepsy Across the SpectrumExternal Web Site Icon” 2012 recommendations related to accelerating, promoting, and disseminating epilepsy self-management research. The MEW Network is supported in part through the Prevention Research Centers Program.
The MEW Network is comprised of one Coordinating Center (Emory University) and six Collaborating Center members:
  • Case-Western Reserve University
  • Dartmouth College
  • Emory University
  • University of Michigan
  • University of Texas at Houston Health Sciences Center
  • University of Washington Health Promotion Research Center
Overview Publications:
Kobau R, Price P, Hawkins NA. News From the CDC: Translating Epilepsy Self-management Research to Practice. Translational Behavioral Medicine: Practice, Policy and Research.2012;2(2):124-125.
Kobau R, Price P, Giles HW, Pennell P, Hargis E.  Forward/Editorial: Centers for Disease Control and Prevention Managing Epilepsy Well Network. Epilepsy Behav. 2010;19(3):216-217.
DiIorio C, Bamps Y, Edwards AL, Escoffery C, Thompson NJ, Begley CE, Shegog R, Clark NM, Selwa L, Stoll S, Fraser RT, Ciechanowski P, Johnson EK, Kobau R, Price PH. The Prevention Research Centers' Managing Epilepsy Well Network. Epilepsy & Behav. 2010;19(3):218-224.

Managing Epilepsy Well Network LogoMEW Network Coordinating Center:
Emory University
Principal Investigator: Nancy J. Thompson, PhD, MPH
Project Director: Yvan Bamps, PhD
The primary goal of the coordinating center is to provide leadership and coordination of efforts across the MEW Network. This includes coordinating a communication infrastructure for MEW Network investigators and collaborating center members; facilitating a multisite research agenda (e.g., epilepsy and depression) to guide collaboration opportunities; engage new community partners; and coordinate MEW Network dissemination and evaluation activities.

image of a clockMEW Network Collaborating Centers
Case-Western Reserve University: Targeted Self-Management for Epilepsy and Mental Illness (TIME)
Principal Investigator: Martha Sajatovic, MD
Purpose: This project targets adults with epilepsy and with serious and persistent mental illness (SMI) (e.g., severe depression, bipolar disorder, and schizophrenia). The researchers will adapt a self-management intervention for adults with epilepsy and SMI based on one shown to be effective in adults with diabetes and SMI. The goals are to improve both neurological and mental health outcomes in adults with epilepsy and SMI.

Current Self-management Studies (2013) 

HOBSCOTCH logoDartmouth College: HOBSCOTCH (HOme Based Self-management and COgnitive Training CHanges Lives)
Principal Investigator: Barbara C. Jobst, MD
Purpose: This project consists of developing and testing a telephone-based self-management program combined with using a gaming device designed to improve memory for adults with epilepsy. HOBSCOTCH will address disease-related skills, organizational skills, and social skills related to epilepsy self-management. HOBSCOTCH will teach strategies to help improve memory function as related to the targeted self-management domains. Primary outcome measures include quality of life and subjective memory perceptions. Secondary outcomes are objective memory function, executive and depressive symptoms.

Technology Attitudes and Usage SurveyEmory University:  1) Technology Attitudes and Usage (TAU) Survey; and 2)  Epilepsy Self-Management Podcasts and Podcasts Evaluation
Principal Investigator: Nancy J. Thompson, PhD, MPH
1) TAU Survey: In an effort to more effectively disseminate information about existing MEW interventions, Emory will conduct surveys targeting adults with epilepsy, their support people, and epilepsy health care providers. These surveys will expand previous research by identifying reported and preferred communication channels for targeted groups to enhance the MEW Network dissemination strategy.
2) Podcast Development and Evaluation: This project consists of developing, evaluating, finalizing and disseminating 16 podcasts on important epilepsy self-management topics. These podcasts will target adults with epilepsy, their support providers, and health care professionals. The podcasts will be made available online as educational tools to promote awareness of recommended epilepsy self-management practices.

FOCUS on EpilepsyUniversity of Michigan: FOCUS on Epilepsy
Principal Investigator: Noreen M. Clark, PhD
The purpose of this project is to conduct a randomized controlled trial of FOCUS on Epilepsy, a promising community- and home-based intervention designed to enhance self-regulation skills among both adults with epilepsy and a family member or close friend assisting them to manage their condition (“support persons”). FOCUS is based on an effective self-regulation model developed by the Univ. of MI Center for Managing Chronic Disease, and was pilot tested in adults with epilepsy demonstrating promising results. FOCUS is delivered in groups, followed by individual and group telephone coaching sessions—the latter designed to enhance peer-support. Outcome measures include epilepsy-related variables, health care use, self-regulation skills, stress, independence, social support, and self-management behaviors.

MINDSET logoUniversity of Texas Health Sciences Center Houston: MINDSET (Management Information & Decision Support Epilepsy Tool)
Principal Investigators: Charles E. Begley, PhD; Ross Shegog, PhD
Purpose: The purpose of this project is to further develop a clinic-based epilepsy decision support system and pilot test its efficacy in a randomized controlled trial. MINDSET is mounted on a tablet computer. It prompts a patient in an epilepsy clinic waiting room to input data in three epilepsy management areas: 1) seizures (i.e., history, management); 2) medicine (i.e., barriers, side effects), and lifestyle (i.e., mood, social, support). MINDSET facilitates patient-provider communication and helps to develop an action plan for sustaining or improving epilepsy self-management behaviors. MINDSET content is based on behavioral science principles and clinical guidelines for epilepsy care.

PACES logoUniversity of Washington: PACES Rural (Program for Active Consumer Engagement in Self-Management)
Principal Investigator: Robert T. Fraser, PhD
Purpose:  To modify and test a consumer driven epilepsy self-management program designed for urban adults with epilepsy (PACES), to be applicable for rural-dwelling adults with epilepsy (PACES Rural). Activities involve conducting focus groups with rural dwelling adults with epilepsy to refine intervention content to meet the mental and psychosocial needs of rural-dwelling adults with epilepsy; integrating the use of Epilepsy Foundation Northwest’s HOPE Mentoring Program (Helping Other People with Epilepsy) mentors to serve as intervention coaches; identifying and implementing distance-based delivery strategies (e.g., telephone administration); and conducting a randomized control trial to test the efficacy of the program.

Publications from the MEW Network (2002-2012)

Johnson EK, Fraser RT, Miller JW, Temkin N, Barber J, Caylor L, Ciechanowski P. A comparison of epilepsy self-management needs: provider and patient perspectives. Epilepsy and Behav.2012;25(2):150-5.
Walker ER, Bamps Y, Burdett A, DiIorio C, Rothkopf J. Social support for self-management behaviors among people with epilepsy: a content analysis of the WebEase program. Epilepsy and Behav. 2012;23(3):285-90.
Chaytor N, Ciechanowski P, Miller JW, Fraser R, Russo J, Unutzer J, Gilliam F. Long-term outcomes from the PEARLS randomized trial for the treatment of depression in patients with epilepsy.Epilepsy and Behav. 2011;20(3):545-549.
DiIorio C, Bamps Y, Escoffery C, Reisinger-Walker E.  Results of a randomized controlled trial: Evaluating WebEase, an online epilepsy self-management program. Epilepsy and Behav.2011;22(3):469-474.
Fraser RT, Johnson EK, Miller JW, Temkin N, Barber J, Caylor L, Ciechanowski P, Chaytor N. Managing Epilepsy Well: self-management needs assessment. Epilepsy and Behav.2011;20(2):291-8.
Ciechanowski P, Chaytor N, Miller J, Fraser R, Russo J, Unutzer J, Gilliam F. PEARLS depression treatment for individuals with epilepsy: a randomized controlled trial. Epilepsy and Behav.2010;19(3):225-231.  
Clark NM, Stoll S, Sweetman M, Youatt EJ, Derry R, Gorelick A. Fostering epilepsy self-management: the perspectives of professionals. Epilepsy and Behav. 2010;19(3): 255-263.
Begley CE, Shegog R, Iyagba B, Chen V, Dubinsky S, Newmark M, Ojukwu N, Friedman D. Socioeconomic status and self-management in epilepsy: comparison of diverse clinical populations in Houston, Texas. Epilepsy and Behav. 2010;19(3):232–238.
Thompson NJ, Reisinger Walker E, Obolensky N, Winning A, Barmon C, DiIorio C, Compton M. Distance delivery of mindfulness-based cognitive therapy for depression: Project UPLIFT. Epilepsy and Behav. 2010;19(3):247-254.
Walker ER, Obolensky N, Dini S, Thompson, NJ. Formative and process evaluations of a CBT and mindfulness intervention for people with epilepsy and depression. Epilepsy and Behav.2010;19(3):239-246.
DiIorio C, Escoffery C, McCarty F, Yeager KA, Henry TR, Koganti A, Reisinger E, Wexler B. Evaluation of WebEase: an epilepsy self-management Web site. Health Education Research.2009;24(2):185-197.
Walker ER, Welxer B, DiIorio C, Escoffery C, McCarty F, Yeager KA. Content and characteristics of goals created during a self-management intervention for people with epilepsy. Journal of Neuroscience Nursing. 2009;41(6):312-321.
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).
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 and Behav. 2008;12:09-14.
Pramuka M, Hendrickson R, Zinski A, Van Cott AC. A psychosocial self-management program for epilepsy: a randomized pilot study in adults. Epilepsy and Behav. 2007;11(4):533-45.

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