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

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

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.

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.

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!

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

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

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

Intervention A computer tablet with 4G internet connection is provided to PWE at no cost for 10-12 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

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

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

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!

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

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.

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.

A look at The pause study Computer tablet

Home Page

Navigation

SM Learning Needs

Goals & Action Plans

Sessions

Learning Modules

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

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”

Dilip Pandey, MD, PhD, FAHA Contact Information Dilip Pandey, MD, PhD, FAHA Email: dpandey@uic.edu Phone: (312) 413-1882 Research Assistant: Nadia Nabulsi, BS Email: nnabul2@uic.edu Email us at: PAUSE@uic.edu

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

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