Managing Epilepsy Well (MEW) Research Network Review by:Robert Fraser Ph.D., CRC Erica Johnson, Ph.D., CRC Consumer Generated Self-Management for Adults with Epilepsy (DiIorio et al., 2010) (Fraser et al., in press)

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. 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 self- management in epilepsy vs. widely available programs for those with arthritis, diabetes, or asthma. These national meetings highlighted the dearth of evidence-based programs to support self- management in epilepsy vs. widely available programs for those with arthritis, diabetes, or asthma.

LWE-II Priority Recommendations in Self-Management Enhancing the Behavioral and Social Science Research relating to epilepsy self- management. Enhancing the Behavioral and Social Science Research relating to epilepsy self- management. Ensure that programs recognize the spectrum of epilepsy and tailor content (e.g., well- controlled seizures, refractory seizures, etc.). Ensure that programs recognize the spectrum of epilepsy and tailor content (e.g., well- controlled seizures, refractory seizures, etc.). CDC translated the recommendations into an applied research program. 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 Four collaborating centers, individual research projects and collaborative projects. Four collaborating centers, individual research projects and collaborative projects. External partners: External partners: American Epilepsy Society, Epilepsy Foundation Affiliates, Epilepsy Medical Centers, etc. Individual research partners: 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 On-line self-management program, based upon social cognitive theory, the trans-theoretical model, and motivational interview. 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). 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 self- management, capacity, medication adherence, sleep quality, self-efficacy, and social support. Program rated highly as to content and navigability in pilot. Pre-test and post-test demonstrated improvement as to overall self- management, capacity, medication adherence, sleep quality, self-efficacy, and social support.

Emory University’s Project Uplift Eight module programs delivered weekly through the Internet or by telephone for people with epilepsy wanting to reduce depression. 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. Combination of cognitive behavioral therapy and mindfulness techniques. Peer with epilepsy / doctoral student facilitator. Peer with epilepsy / doctoral student facilitator. Data now being analyzed – Different modalities vs. wait list control. 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. Utilizing a co-hort of 450 patients from 2 socioeconomically diverse Houston clinical sites. 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. 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. Additional medical chart review provides information on clinical outcome and medication adherence.

University of Texas - Houston Evaluation of a Clinic-Based Decision Support System. Mounted on PDA computer accessed by patients and healthcare providers during clinic visits. 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. 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 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.

University of Washington Consumer Generated Self-Management for Adults with Epilepsy Most self-management models involve a Most self-management models involve a “top down” programmatic approach. We were desirous of a consumer- We were desirous of a consumer- generated intervention model.

Managing Epilepsy Well: Needs Assessment Year 1: Year 1: Evidentiary review to determine seizure, health, psychosocial problems, and well-being variables (prior needs assessments, etc.). 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. 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 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%) Survey methodology important (Dillman et al., 2008): Survey methodology important (Dillman et al., 2008): $5 (cash) with physician invitation letter, survey, consent, return SASE $5 (cash) with physician invitation letter, survey, consent, return SASE $5 (cash) sent upon receipt of survey & consent $5 (cash) sent upon receipt of survey & consent Hand-addressed & stamped Hand-addressed & stamped

Mail Survey Seizure information Seizure information General health information: General health information: Perceived well-being; co-morbid conditions Perceived well-being; co-morbid conditions Mood and anxiety measures (PHQ, GAD) Mood and anxiety measures (PHQ, GAD) Life problem rating scales for the following domains: Life problem rating scales for the following domains: Work Work Independent living Independent living Socializing Socializing Epilepsy management Epilepsy management Managing emotions and cognition Managing emotions and cognition Health and well-being Health and well-being Medical care Medical care Self-management program format, leadership, duration, etc. Self-management program format, leadership, duration, etc. Demographic information Demographic information

Outpatient Survey Results Average age = 41 years Average age = 41 years 42% > college degrees 42% > college degrees 43.6% male 43.6% male 30.7% employed FT, 15.3% PT 30.7% employed FT, 15.3% PT 23.3% receive disability income due to sz’s 23.3% receive disability income due to sz’s Average AED’s = 2.1 (range = 1-9) Average AED’s = 2.1 (range = 1-9) 79% reported they have a specific sz type 79% reported they have a specific sz type 21.5% reported simple partial sz’s 21.5% reported simple partial sz’s 35% reported complex partial sz’s 35% reported complex partial sz’s 19% reported secondarily generalized sz’s 19% reported secondarily generalized sz’s 44% reported tonic clonic sz’s 44% reported tonic clonic sz’s 8.6% reported myoclonic sz’s 8.6% reported myoclonic sz’s 30.7% reported absence sz’s 30.7% reported absence sz’s 4.9% reported PNES 4.9% reported PNES Seizure Frequency Seizure Frequency 24.5% haven’t had a sz in 2+ yrs 24.5% haven’t had a sz in 2+ yrs 33.7% have sz’s once/month 33.7% have sz’s once/month 18.4% have sz’s 1-3 times/month 18.4% have sz’s 1-3 times/month 11.7% have 1 or more sz’s/week 11.7% have 1 or more sz’s/week 6.1% have 1 or more sz’s/day 6.1% have 1 or more sz’s/day

Outpatient Survey Results 36.6% endorse 1+ co-morbid medical conditions. 36.6% endorse 1+ co-morbid medical conditions. 14.1% endorse 1+ co-morbid neurological 14.1% endorse 1+ co-morbid neurologicalconditions. 4.3% endorse 1+ co-morbid sensory conditions. 4.3% endorse 1+ co-morbid sensory conditions. 22.7% endorse 1+ co-morbid emotional/mental 22.7% endorse 1+ co-morbid emotional/mental health conditions. 40.5% have a lifetime hx of depression tx. 40.5% have a lifetime hx of depression tx. 20.9% report current depression tx. 20.9% report current depression tx. 22.7% have lifetime hx of anxiety tx. 22.7% have lifetime hx of anxiety tx. 12.3% report current anxiety tx. 12.3% report current anxiety tx.

Outpatient General Survey Results Large within group heterogeneity on problem ratings and the problem ratings are low — why? Large within group heterogeneity on problem ratings and the problem ratings are low — why? Are there more homogenous subgroups? Are there more homogenous subgroups? Depressed, etc. Depressed, etc. Preliminary analyses targeted predictors of positive well-being: Preliminary analyses targeted predictors of positive well-being: Perceived health scale Perceived health scale Happiness scale Happiness scale Life satisfaction scale Life satisfaction scale

Preliminary Analyses Best correlates of “adjustment” (health, happiness, life satisfaction): Best correlates of “adjustment” (health, happiness, life satisfaction): Seizure severity Seizure severity Depression Depression Anxiety Anxiety Income/poverty line Income/poverty line Education Education Cognitive problems Cognitive problems

Based Upon Multivariate Linear Progression The best predictor of each adjustment domain was the PHQ-9 depression score alone. The best predictor of each adjustment domain was the PHQ-9 depression score alone. As mood decreases, so does health, happiness, and life satisfaction. As mood decreases, so does health, happiness, and life satisfaction. Second best predictor, indications of cognitive problems, > three of seven. Second best predictor, indications of cognitive problems, > three of seven.

Secondary Analyses How do people with either… probable major depression, or probable major depression, or self-reported cognitive problems 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 People with probable major depression or cognitive problems rate virtually all aspects of their life area problems significantly higher than those without. 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. Although there are some problem areas that have salience for both groups.

Self-Management Preferences In-person individual (49%) or group sessions (33%). In-person individual (49%) or group sessions (33%). Meet for 1 hour on a weeknight (55%). Meet for 1 hour on a weeknight (55%). Led by a physician or a professional, plus lay person with epilepsy (55%). Led by a physician or a professional, plus lay person with epilepsy (55%). Educational + emotional coping strategies (42%). Educational + emotional coping strategies (42%). Number of sessions, a decided majority < 8 sessions (57%). Number of sessions, a decided majority < 8 sessions (57%).

MEW Intervention Content 1. Medical Issues and Epilepsy 2. Dealing with Sadness and Stress 3. Assertive Communication and My Disability 4. Cognition: Memory and Attention 5. Cognition: Information Processing 6. Increasing Community Participation 7. General Health and Well-Being 8. Managing My Medical Care

Implications Interventionists need to consider direct input from patients/service recipients for tx design. 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. 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). 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? Address life problem areas within the context of mood management and coping?

MEW Network Collaborative Project(s) – Ongoing Funded by the NIH, Challenge Grant Initiative, Emory is the coordinating center. 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). Self-Management Tool Workgroup Self-Management Tool Workgroup