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Managing Epilepsy Well (MEW) Research Network. (DiIorio et al., 2010). Consumer Generated Self-Management for Adults with Epilepsy. (Fraser et al., in press). Review by: Robert Fraser Ph.D., CRC Erica Johnson, Ph.D., CRC.

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Managing epilepsy well mew research network

Managing Epilepsy Well (MEW) Research Network

(DiIorio et al., 2010)

Consumer Generated Self-Management for Adults with Epilepsy

(Fraser et al., in press)

Review by: Robert Fraser Ph.D., CRC

Erica Johnson, Ph.D., CRC

Managing epilepsy well mew research network

  • Funding for epilepsy self-management evolved from recommendations from two national conferences, Living With Epilepsy 1 (1993) and Living With Epilepsy 2 (2003), co-sponsored by the Epilepsy Foundation, CDC, etc.

  • These national meetings highlighted the dearth of evidence-based programs to support self-management in epilepsy vs. widely available programs for those with arthritis, diabetes, or asthma.

Lwe ii priority recommendations in self management
LWE-II Priority Recommendations recommendations from two national conferences, in Self-Management

  • Enhancing the Behavioral and Social Science Research relating to epilepsy self-management.

  • Ensure that programs recognize the spectrum of epilepsy and tailor content (e.g., well-controlled seizures, refractory seizures, etc.).

  • CDC translated the recommendations into an applied research program.

Managing epilepsy well mew research network

In 2007, CDC supported the development of the Managing Epilepsy Well Network.

First Year of Funding:

Emory – the Coordinating Center

University of Texas Health Science-Houston

Second Year of Funding:

University of Michigan

University of Washington

Structures of the mew network
Structures of the MEW Network Epilepsy Well Network.

  • Four collaborating centers, individual research projects and collaborative projects.

  • External partners:

    American Epilepsy Society, Epilepsy Foundation Affiliates, Epilepsy Medical Centers, etc.

  • Individual research partners:

    Baker (U.K.), Thorbecke (Germany), etc. with special expertise.

Mission of the mew network
Mission of the MEW Network Epilepsy Well Network.

“To advance the science related to epilepsy self-management by facilitating and implementing research, conducting research in collaboration with network and community partners, and broadly disseminating research findings.”

Emory university s webease
Emory University’s WebEase Epilepsy Well Network.

  • On-line self-management program, based upon social cognitive theory, the trans-theoretical model, and motivational interview.

  • Three modules (medication, stress, and sleep) and My Log (data tracking system).

  • Program rated highly as to content and navigability in pilot. Pre-test and post-test demonstrated improvement as to overall self-management, capacity, medication adherence, sleep quality, self-efficacy, and social support.

Emory university s project uplift
Emory University’s Project Uplift Epilepsy Well Network.

  • Eight module programs delivered weekly through the Internet or by telephone for people with epilepsy wanting to reduce depression.

  • Combination of cognitive behavioral therapy and mindfulness techniques.

  • Peer with epilepsy / doctoral student facilitator.

  • Data now being analyzed – Different modalities vs. wait list control.

University of texas houston
University of Texas - Houston Epilepsy Well Network.

Socioeconomic Differences in Epilepsy Self-Management

and Its Impact on Treatment Adherence, Health Care

Use, and Health Outcomes.

  • Utilizing a co-hort of 450 patients from 2 socioeconomically diverse Houston clinical sites.

  • Four quarterly interviews to obtain longitudinal information on their seizure characteristics, knowledge and attitudes about epilepsy, healthcare use, and quality of life.

  • Additional medical chart review provides information on clinical outcome and medication adherence.

University of texas houston1
University of Texas - Houston Epilepsy Well Network.

Evaluation of a Clinic-Based Decision

Support System.

  • Mounted on PDA computer accessed by patients and healthcare providers during clinic visits.

  • Based upon patients’ epilepsy symptoms, behavior, thoughts and beliefs, provides information about patients’ self-management needs, discussion point recommendations, patient management goals, and “action plan” suggestions.

University of michigan
University of Michigan Epilepsy Well Network.

Contributing to Managing Epilepsy Well

Phase One: Extensive literature review related not

only to epilepsy self-management, but self-

management across diverse disabilities.

Phase Two: Survey research across 101 key

informants who provide or know about

evaluated interventions to improve the lives of those with epilepsy.

University of washington
University of Washington Epilepsy Well Network.

Consumer Generated Self-Management for

Adults with Epilepsy

  • Most self-management models involve a

    “top down” programmatic approach.

  • We were desirous of a consumer-

    generated intervention model.

Managing epilepsy well needs assessment
Managing Epilepsy Well: Epilepsy Well Network.Needs Assessment

Year 1:

Evidentiary review to determine seizure, health, psychosocial problems, and well-being variables (prior needs assessments, etc.).

Focus group methodology (2 patient groups) to confirm items from evidentiary review, pilot needs assessment survey.

Mail survey methodology to collect patient and provider data.

Mail survey
Mail Survey Epilepsy Well Network.

Providers (n = 20; 90+% response rate);

Patients (n = 270) from HMC/UWMC, Swedish, EFNW

N = 165 surveys returned (61%)

Survey methodology important (Dillman et al., 2008):

$5 (cash) with physician invitation letter, survey, consent, return SASE

$5 (cash) sent upon receipt of survey & consent

Hand-addressed & stamped

Mail survey1
Mail Survey Epilepsy Well Network.

Seizure information

General health information:

Perceived well-being; co-morbid conditions

Mood and anxiety measures (PHQ, GAD)

Life problem rating scales for the following domains:


Independent living


Epilepsy management

Managing emotions and cognition

Health and well-being

Medical care

Self-management program format, leadership, duration, etc.

Demographic information

Outpatient survey results
Outpatient Survey Results Epilepsy Well Network.

Average age = 41 years

42% > college degrees

43.6% male

30.7% employed FT, 15.3% PT

23.3% receive disability income due to sz’s

Average AED’s = 2.1 (range = 1-9)

79% reported they have a specific sz type

21.5% reported simple partial sz’s

35% reported complex partial sz’s

19% reported secondarily generalized sz’s

44% reported tonic clonic sz’s

8.6% reported myoclonic sz’s

30.7% reported absence sz’s

4.9% reported PNES

Seizure Frequency

24.5% haven’t had a sz in 2+ yrs

33.7% have sz’s once/month

18.4% have sz’s 1-3 times/month

11.7% have 1 or more sz’s/week

6.1% have 1 or more sz’s/day

Outpatient survey results1
Outpatient Survey Results Epilepsy Well Network.

36.6% endorse 1+ co-morbid medical conditions.

14.1% endorse 1+ co-morbid neurological


4.3% endorse 1+ co-morbid sensory conditions.

22.7% endorse 1+ co-morbid emotional/mental

health conditions.

40.5% have a lifetime hx of depression tx.

20.9% report current depression tx.

22.7% have lifetime hx of anxiety tx.

12.3% report current anxiety tx.

Outpatient general survey results
Outpatient General Survey Results Epilepsy Well Network.

Large within group heterogeneity on problem ratings and the problem ratings are low — why?

Are there more homogenous subgroups?

Depressed, etc.

Preliminary analyses targeted predictors of positive well-being:

Perceived health scale

Happiness scale

Life satisfaction scale

Preliminary analyses
Preliminary Analyses Epilepsy Well Network.

Best correlates of “adjustment” (health, happiness, life satisfaction):

Seizure severity



Income/poverty line


Cognitive problems

Based upon multivariate linear progression
Based Upon Multivariate Linear Progression Epilepsy Well Network.

The best predictor of each adjustment domain was the PHQ-9 depression score alone.

As mood decreases, so does health, happiness, and life satisfaction.

Second best predictor, indications of cognitive problems, > three of seven.

Secondary analyses
Secondary Analyses Epilepsy Well Network.

How do people with either…

probable major depression, or

self-reported cognitive problems

…rate their life problems, relative to people without these problems?

Probable depression:PHQ-9 > 10.

Cognitive problems: Agree/strongly agree that alertness, attention, memory, word finding, multitasking, problem solving, and processing speed are deficient, > three of seven.

Results Epilepsy Well Network.

People with probable major depression or cognitive problems rate virtually all aspects of their life area problems significantly higher than those without.

Although there are some problem areas that have salience for both groups.

Self management preferences
Self-Management Preferences Epilepsy Well Network.

In-person individual (49%) or group sessions (33%).

Meet for 1 hour on a weeknight (55%).

Led by a physician or a professional, plus lay person with epilepsy (55%).

Educational + emotional coping strategies (42%).

Number of sessions, a decided majority < 8 sessions (57%).

Mew intervention content
MEW Intervention Content Epilepsy Well Network.

  • Medical Issues and Epilepsy

  • Dealing with Sadness and Stress

  • Assertive Communication and My Disability

  • Cognition: Memory and Attention

  • Cognition: Information Processing

  • Increasing Community Participation

  • General Health and Well-Being

  • Managing My Medical Care

Implications Epilepsy Well Network.

Interventionists need to consider direct input from patients/service recipients for tx design.

Attention to a more challenged or poorly adjusted subgroup of participants in terms of emotional and cognitive health.

Self-management programming may need to be more targeted to optimally serve higher-need groups (while still serving mainstream group).

Address life problem areas within the context of mood management and coping?

Mew network collaborative project s ongoing
MEW Network Collaborative Project(s) – Ongoing Epilepsy Well Network.

  • Funded by the NIH, Challenge Grant Initiative, Emory is the coordinating center.

    Utilize Project Uplift materials to “prevent/reduce depression risk” among adults with epilepsy and mild/moderate symptoms.

    Delivery by telephone or Internet, tested as to efficacy across the four MEW collaborating centers (h = 42 per site).

  • Self-Management Tool Workgroup