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Development and Piloting of a Program Designed to Develop Self Regulation
Skills and Strengthen Social Support for Adults with Refractory Epilepsy
Shelley Stoll MPH1, Arlene Gorelick MPH2, Russell Derry MPH2, Linda M Selwa MD1, Emily J Youatt MPH1,
Noreen M Clark PhD1
1. University of Michigan 2. Epilepsy Foundation of Michigan
Introduction
The Intervention
There is a need for theory-based interventions that help
adult individuals with epilepsy (IWE) manage epilepsy
and its effects on quality life. Interventions promoting
self-regulation have improved health and quality of life
outcomes in other chronic diseases and hold promise for
IWE.
The FOCUS on Epilepsy intervention, piloted earlier this
year in a community setting, integrates self-regulation
skill-building with information and social support for IWE
and their family members or friends. This poster
explores the experiences of the participants with epilepsy
and identifies areas where special attention is needed for
future evaluation.
The Participants
Participants were recruited via email, web
ads, and phone calls to Epilepsy
Foundation of Michigan clients.
Eligibility requirements:
• at least 21 years of age
• diagnosed with epilepsy for at least one
year
• have at least one seizure in the last
year
• mentally able to participate
• can recruit a close friend or family
member willing to also take part in the
program
Seizure Types
F igure out the problem or issue
O bserve your routine
C hoose a change goal
U ndertake a change strategy
S tudy the results and select a reward
45-54
4 month f/u Sig (2score (SD) tailed)
Positive affect and
well-being
31.12 (5.7)
34.06 (0.6.3)
p=0.008
Quality of life (QOLIE-10-P)*
3.47 (0.7)
2.90 (0.8)
p=0.001
9.29 (6.1)
7.94 (5.4)
p=0.121
15.65 (2.7)
18.24 (2.5)
p=0.302
44.82 (7.6)
45.53 (7.9)
p=0.671
Depression (PHQ-9)*
Patient Health Questionnaire
Depression Scale
Healthy days (of past 30)
Stress
No statistically significant changes
• Seizure frequency
• Health care utilization (ED visits, hospitalization, scheduled and unscheduled
visits to health care provider)
Memory and
Focus
Special considerations in assessment
Content
Format
35-44
25-34
Years with Epilepsy Diagnosis
Week1
In-person,
day-long
workshop
5-10
• FOCUS steps
• Focus areas to consider
•Healthy behaviors
•Cognitive effects
•Social and emotional health
• First FOCUS steps: figure out problem
or issue and create observation plan
Week 2
One-on-one
coaching call
• Review observation period
• Choose a change goal
• Develop strategy to achieve goal
Week 3
One-on-one
coaching call
•
•
•
•
Absence
21-30
11-20
0
Baseline
score (SD)
N=17 for the above analyses
*lower score is desirable
Social
Connectedness
Issues Chosen
by Participants
to Address
Outcome
Self management behaviors
55-64
31-40
Complex partial
Extensive process data were collected from:
• Participants: end-of-workshop surveys and post-program phone
interviews
• Coaches: telephone session logs and in-depth interviews
• Workshop facilitators: in-depth interviews
Promising Results: Important outcomes in the right direction
Other
Simple partial
Tonic-clonic
Participating IWEs completed baseline and 4-month telephone
interviews to assess outcomes and to explore the utility of existing and
newly created scales and indices. Outcome scores for the scales were
calculated by summing the values of multiple individual items, except
for the quality of life measure, which is a mean score of the items
answered. Paired t-tests were used to compare the mean scores
from baseline to follow-up. Results were not adjusted for
demographic or other factors.
Results
The FOCUS steps embody the self regulation process used
by participants to address an issue or concern of their choice.
The 6-week pilot program consisted of a day-long workshop
for IWE and their supporters, followed by regular telephone
sessions with a coach. In these calls, IWE received guidance
from their coach as they practiced the FOCUS self-regulation
skills in addressing an issue in their lives that impacts their
health and/or quality of life.
Age
Results
Assessment Methods
2
4
6
8
10
Number participants reporting type
Race/Ethnicity
• 65% White/Caucasian
• 29% Black/African American
• 6% Hispanic/Latino
Employment Status
• 47% Unable to work
• 24% Out of work > 1 year
• 18% Retired
Education
• 29% High school grad or GED
• 24% Some college or associates
• 29% College degree
• 18% Advanced graduate degree
Household Income
• 30% less than $20K
• 35% $20K-$50K
• 35% over $50K
• 76% on disability insurance or
social security disability
The study was approved for human subjects research by the University of Michigan’s Health Institutional
Review Board (HUM00040761).
Week 4
Conference call
with other IWE
Week 5
One-on-one
coaching call
Week 6
Conference call
with other IWE
Review progress towards goal
Troubleshoot barriers
Modify goal if needed
Select reward and new focus area if goal
achieved
• Share FOCUS challenges and successes
with peers
• Progress with next FOCUS step; customized
to participants stage in the process
• Share FOCUS challenges and successes
with peers
Diet and Exercise
Sleep
Communication
with Family and
Friends
The program was well-received:
•of 21 individuals with epilepsy who attended the workshop, 19 completed
the program
•17 completed the 4 month follow-up interview
•14 of the 17 respondents said they would recommend the
program to others
The following quotes illustrate common themes among those with
especially positive experiences:
“I plan to keep moving forward to
empowering and taking my life into my
hands regardless to how epilepsy has
tried to conquer me. I am mine and this
program just reassured me of that.”
“The group support [was the most important
part]. I am not the only one out there. I have
felt so alone for so long. I don't anymore.”
“Once I started taking care of myself
more, I reduced the seizures, was able to
do more things that I hadn't been able
to. I took a trip by myself to visit some
friends and worked this summer.”
• Small sample size
• Short duration of follow-up
• Need to examine compelling aspects of self regulation in a larger sample,
e.g., higher self efficacy appears correlated with less depression (r= -0.549,
p=0.02)
Conclusions
Findings indicate that an intervention focusing on self
regulation, provided in a community setting, and involving
family or friends can be successfully implemented and wellreceived among adults with epilepsy. Results from short-term
evaluations suggest that outcomes may include effects on self
management behaviors, quality of life, positive affect and
well-being, depression, and reported healthy days.
Future study with larger samples and longer time frames are
needed to explore these outcomes and others, including
seizure frequency and health care use. The elements of self
regulation most important in bringing about change in epilepsy
outcomes also deserve further study.
This study was part of a Special Interest Project of the Prevention Research Center of Michigan, funded by
the Centers for Disease Control and Prevention (5-U48-DP-001901-02) and a member of the Managing
Epilepsy Well Network. For more information, see: http://www.sph.emory.edu/ManagingEpilepsyWell/