Transcript 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
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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 selfmanagement in epilepsy vs. widely available
programs for those with arthritis, diabetes, or
asthma.
LWE-II Priority Recommendations
in Self-Management
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Enhancing the Behavioral and Social Science
Research relating to epilepsy selfmanagement.
Ensure that programs recognize the spectrum
of epilepsy and tailor content (e.g., wellcontrolled seizures, refractory seizures, etc.).
CDC translated the recommendations into an
applied research program.
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
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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
“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
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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 selfmanagement, capacity, medication adherence,
sleep quality, self-efficacy, and social support.
Emory University’s Project Uplift
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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
Socioeconomic Differences in Epilepsy Self-Management
and Its Impact on Treatment Adherence, Health Care
Use, and Health Outcomes.
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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 - Houston
Evaluation of a Clinic-Based Decision
Support System.
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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
Contributing to Managing Epilepsy Well
Phase One: Extensive literature review related not
only to epilepsy self-management, but selfmanagement 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
Consumer Generated Self-Management for
Adults with Epilepsy
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Most self-management models involve a
“top down” programmatic approach.
We were desirous of a consumergenerated intervention model.
Managing Epilepsy Well:
Needs Assessment
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Year 1:
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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
Providers (n = 20; 90+% response rate);
Patients (n = 270) from HMC/UWMC, Swedish, EFNW
N = 165 surveys returned (61%)
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Survey methodology important (Dillman et al., 2008):
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$5 (cash) with physician invitation letter, survey, consent,
return SASE
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$5 (cash) sent upon receipt of survey & consent
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Hand-addressed & stamped
Mail Survey
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Seizure information
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General health information:
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Perceived well-being; co-morbid conditions
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Mood and anxiety measures (PHQ, GAD)
Life problem rating scales for the following domains:
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Work
Independent living
Socializing
Epilepsy management
Managing emotions and cognition
Health and well-being
Medical care
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Self-management program format, leadership, duration, etc.
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Demographic information
Outpatient Survey Results
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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
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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
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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 Results
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36.6% endorse 1+ co-morbid medical conditions.
14.1% endorse 1+ co-morbid neurological
conditions.
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
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Large within group heterogeneity on problem
ratings and the problem ratings are low — why?
Are there more homogenous subgroups?
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Depressed, etc.
Preliminary analyses targeted predictors of positive
well-being:
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Perceived health scale
Happiness scale
Life satisfaction scale
Preliminary Analyses
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Best correlates of “adjustment” (health,
happiness, life satisfaction):
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Seizure severity
Depression
Anxiety
Income/poverty line
Education
Cognitive problems
Based Upon Multivariate Linear
Progression
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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
How do people with either…
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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
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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
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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
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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
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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
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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).
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Self-Management Tool Workgroup