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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(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
First Year of Funding:
Emory – the Coordinating Center
University of Texas Health Science-Houston
Second Year of Funding:
University of Michigan
University of Washington
American Epilepsy Society, Epilepsy Foundation Affiliates, Epilepsy Medical Centers, etc.
Baker (U.K.), Thorbecke (Germany), etc. with special expertise.
“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.”
Socioeconomic Differences in Epilepsy Self-Management
and Its Impact on Treatment Adherence, Health Care
Use, and Health Outcomes.
Evaluation of a Clinic-Based Decision
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.
Consumer Generated Self-Management for
Adults with Epilepsy
“top down” programmatic approach.
generated intervention model.
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.
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
General health information:
Perceived well-being; co-morbid conditions
Mood and anxiety measures (PHQ, GAD)
Life problem rating scales for the following domains:
Managing emotions and cognition
Health and well-being
Self-management program format, leadership, duration, etc.
Average age = 41 years
42% > college degrees
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
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
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
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.
Large within group heterogeneity on problem ratings and the problem ratings are low — why?
Are there more homogenous subgroups?
Preliminary analyses targeted predictors of positive well-being:
Perceived health scale
Life satisfaction scale
Best correlates of “adjustment” (health, happiness, life satisfaction):
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.
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.
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.
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%).
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?
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).