1. PAUSE to Learn Your Epilepsy
Know about Self-Management of Epilepsy to Navigate Healthcare System
PAUSE to Learn Your Epilepsy
Dilip K. Pandey, MD, PhD, FAHA
Associate Professor
Director, Clinical Neuroscience Research
University of Illinois at Chicago College of Medicine

2. Background: Commonly Used Acronyms
PAUSE = Personalized Internet Assisted Underserved Self-management of Epilepsy
PWE = People with epilepsy
SM = Self-management

3. What is Self-Management?
Tasks that individuals must undertake to live with one or more chronic conditions.
Tasks include having confidence to deal with medical management, role management, and emotional management of their conditions.

4. Background: Self-Management of Epilepsy
Treatment
Medication adherence
Communication with doctors and nurses
Healthcare appointments
Seizures
Recognition and avoidance of "triggers"
Use of seizure trackers and diaries
Seizure first-aid
Lifestyle
Sleep, diet, & exercise
Reduced stress
Support network
Self-Management
Self-management education involves a plan that provides patients with knowledge and problem-solving skills to improve their lives. PWE play a central role in managing their epilepsy. We want them to feel confident in their ability to identify the problems they face related to epilepsy, make decisions, and take actions to reach goals that they set in collaboration with their healthcare team to make their life better. We want PWE to feel comfortable communicating with their healthcare team and finding and using resources that will be helpful for them. Another important part of self-management education is setting goals and action plans.

5. Chronic Care Model
Need to build collaboration between providers and patients living with Chronic diseases
Empower patients to manage their care for chronic condition
Self-management!

7. Introduction to PAUSE
Partnering with the Epilepsy Foundation to develop a personalized approach to self-management for adults with epilepsy using computer tablets that provide:
Access to online SM resources
One-on-one video calls to assist with navigating self-management education and available resources

8. Key Aspects of PAUSE Chronic care model – SM education
Collaborative approach between PWE and healthcare team to identify individual SM needs
Development of personalized goals and action plans
Video calls to assist with self-management education

9. Our Mission
Empower & improve the quality of life for people with epilepsy
Educate & reinforce healthy behaviors & SM skills
Improve health care delivery & use of SM tools & resources
Increase collaboration between people with epilepsy, caregivers, & health providers
Share information & findings with epilepsy community

10. Intervention
A computer tablet with 4G internet connection is provided to PWE at no cost for weeks to access:
Epilepsy.com SM resources
Tailored SM learning modules based on individual’s learning checklist and goals
Caregivers provide assistance as needed to participants who are unable to read at an 8th grade level
Assistance provided through weekly video calls
8 to 12 weeks, varying with participants’ pace and learning needs
Assistant answers questions, introduces resources & tools, keeps participant engaged

11. Conceptual Framework PAUSE Impact ↑ Medication adherence ↑ SM skills
↑ Confidence
↑ Management of epilepsy
↓ Seizure frequency
↓ ER visits
↓ Hospitalizations
↓ Stigma
Healthcare System
Epilepsy clinic
Mediators
Self-efficacy
Outcome expectancy
Knowledge
Communication
Personal impact of epilepsy
Intervention
Personalized SM education
Overall
↑ Quality of life
Internet-connected computer tablet with personalized epilepsy SM application
Mobile Technology
PAUSE
Community
Epilepsy Foundation Local Chapters

12. PAUSE Timeline Phase 1 Phase 2 Phase 3 Communicate
Build epilepsy SM education program
Phase 2
Enroll participants from UIC epilepsy clinic
Intervention & follow-up
Phase 3
Enroll participants from community through EFGC
Create Community Advisory Committee to share findings with epilepsy community
We are currently in Phase 2, moving in to Phase 3 which will incorporate the EFGC.
Communicate

13. Current Enrollment Around 150 more participants to go!
Started enrolling patients from UI Health Epilepsy Clinic in October 2015
91 eligible patients referred
40 completed baseline questionnaires
18 completed education
Around 150 more participants to go!

14. Bringing PAUSE to the Community
With the support of EFGC, we will begin to enroll community members in our self-management education program soon!

15. Who’s Eligible to Participate?
All non-institutionalized ambulatory adults living with epilepsy who are willing to participate and meet the following criteria: 
age 18 and older
speak and understand English
diagnosed with epilepsy
Must not have severe or unstable medical or psychiatric conditions that will disrupt PAUSE participation.
Due to surgeries, long hospitalizations, etc.

16. Data Collected Patient-reported outcome measures
Background health, depression, medication adherence, self-efficacy, personal impact of epilepsy, etc.
Time spent on tablet & number of modules visited
Number & duration of video calls
Video call quotes
Use of Epilepsy Foundation tools, resources, and services
My Seizure Diary, seizure tracker
Case management, support groups, mentorship programs, etc.

17. A look at The pause study Computer tablet

18. Home Page

19. Navigation

20. SM Learning Needs

21. Goals & Action Plans

22. Sessions

23. Learning Modules

24. Resources & Tools
Talk about “connect” and “talkaboutit.org”

25. Video Call Quotes: Benefits of PAUSE
More knowledgeable about epilepsy
“I am learning things that are very interesting that I never knew”
Learning to handle stress
Setting goals and action plans
Keeping records/diaries/trackers
“I got a new journal to write down my moods and triggers and track when I get a headache”
“The program helps me understand epilepsy better and it helps me acknowledge it and accept it more”
“I am more okay talking about it”
“I downloaded a yoga app to start a workout regimen”
“My fiancé has noticed that I am remembering things more”
“I am doing a much better job of taking my medication and I started using a pill organizer”

26. Dilip Pandey, MD, PhD, FAHA
Contact Information
Dilip Pandey, MD, PhD, FAHA
Phone: (312)
Research Assistant:
Nadia Nabulsi, BS
us at:

27. Study Team Dilip Pandey, MD, PhD Jeffrey A. Loeb, MD, PhD
Yevgenya Kaydanova, MD, PhD
Woojin Song, PhD
Patricia Fischer, RN
Patty Shafer, RN, MN
Mitra Habibi, PharmD
Marie Chesaniuk, MA
Nadia Nabulsi, BS
Katie Ozenberger, BS
Himanshu Anand, BTech
Kevin Chang, MPH
Inseya Lakhani

28. THANK YOU