Nancy J. Thompson, Ph.D., M.P.H. Elizabeth R. Walker, M.A.T., M.P.H. Rollins School of Public Health of Emory University Ashley Winning, M.P.H. Harvard School of Public Health

Disclosure We have no actual or potential conflict of interest in relation to this presentation.

Ashley Winning, M.P.H. Harvard School of Public Health Harvard University 1 This work was done at the Rollins School of Public Health of Emory University

Using Practice and Learning to Increase Favorable Thoughts

Project UPLIFT Was designed for delivery of mindfulness-based cognitive therapy by telephone and Internet The version of Project UPLIFT presented here was designed for people with epilepsy The work we are presenting today was funded by the Centers for Disease Control and Prevention The participants described all resided in the State of Georgia because of concerns surrounding the state- level licensing of mental health professionals

The Content

About Cognitive-Behavioral Therapy (CBT) Designed by Aaron Beck to address the unrealistic thinking and outcome expectations associated with depression. Uses verbal techniques to investigate the reasoning behind specific attitudes and assumptions. Client is taught to recognize, monitor, and record negative thoughts on a daily record. Beck recommends first including behavioral techniques, like assigning activities to help structure the depressed individual who may have trouble getting started –using pleasurable activities for reinforcement, –breaking tasks into simple steps, –providing assertiveness training, –guidance in role-playing and mental rehearsal.

A Recent Addition—Mindfulness CBT focuses on changing thought content while mindfulness changes relationship to the thoughts— helps to see them as passing events that do not necessarily represent a state of reality. Mindfulness is especially important in preventing relapse, which often occurs with depression. We used Jon Kabat-Zinn’s definition of “paying attention in a particular way: on purpose, in the present moment, and non-judgmentally.”

UPLIFT was guided by Mindfulness-based Cognitive Therapy for Depression Developed by Segal, Williams, and Teasdale MBCT SessionsUPLIFT Sessions 1. Automatic Pilot1. Monitoring Thoughts 2. Dealing with Barriers2. Challenging and Changing Thoughts 3. Mindfulness of the Breath3. Coping and Relaxing 4. Staying Present4. Attention and Mindfulness 5. Allowing/Letting Be5. The Present as a Calm Place 6. Thoughts are not Facts6. Thoughts as Changeable and Impermanent 7. How can I best take care of myself?7. Pleasure and Reinforcement 8. Using what has been learned in the future 8. Relapse Action Plans

Telephone Version TimeActivityDescription 10 minutesCheck-in  The group will report on their experiences with Modifying & Relaxation and help each other with any problems. 10 minutesTeaching  Group will learn about the concepts of Mindfulness & the importance of paying attention. 10 minutesGroup Exercise  The Pebble Exercise is an activity in mindful attention. The group will practice what they learned during the teaching portion of the session. 10 minutesDiscussionDiscussion of the Pebble Exercise/describe pebble to group. 15 minutesSkill-building w/ discussion  Mindfulness of a routine activity: Walking Meditation. The Walking Meditation is meditation in motion; it allows us to practice mindfulness in the most routine of activities. 5 minutesReview & Homework  Homework: Monitoring with Modification and Practicing Mindfulness of Routine Activities 3 times during the week. Session Four: Attention and Mindfulness

Web Version Session One: Monitoring Thoughts

Activities were Adapted UPLIFT ActivityMBCT Activity The “What-ifs” of Epilepsy (S1)--- ARMed Against the Blues (S2)--- Body Scan and Progressive Muscle Relaxation (S3) Body Scan (S1) Pebble Exercise (4)Raisin Exercise (S1) Guided Meditation on Pleasure (S7)Pleasant Events Calendar (Session 2) For depression treatment For distance delivery For people with epilepsy

The Structure

Group Delivery at a Distance UPLIFT was delivered by Web and telephone to people in groups of 6-7 Group Delivery was important for support surrounding Epilepsy The Web platform used was Blackboard Laptops and Internet access were provided for people assigned to the Web condition who did not have computers or Web access

Group Facilitation Groups were co-facilitated One facilitator was a graduate student in Public Health to ensure the integrity of the delivery The other facilitator was a person with epilepsy to build capacity in the epilepsy community A licensed psychologist supervised the facilitators and provided back-up Listened to telephone tapes Monitored Web discussions

Potential Benefits Cost-effective Can reduce access problems, reducing health disparities mobility limited rural Allows group delivery even for rare conditions Potential for anonymity and avoidance of stigma Teaches skills to prevent relapse

Elizabeth Walker, M.P.H., M.A.T. Rollins School of Public Health Emory University

Evaluation Purposes: Determine the acceptability of Project UPLIFT Assess the complexities anticipated and encountered when participating Evaluate the overall response to the program components

Participants Formative Evaluation n=9 Focus groups (n=3) Process Evaluation n=38 Survey following participation Tertiary epilepsy clinic Focus Group n=9 Pilot Participants n=38 Age (years), Mean (SD) 33.6 (10.69)35.1 (10.98) Depression score, Mean (SD) Range 22.4 (5.59) (7.25) Gender, n (%) Female 7 (77.8)30 (78.9) Race, n (%) White Black 7 (77.8) 2 (22.2) 29 (76.3) 9 (23.7) Marital Status, n (%) Married Single Separated/Divorced/Widowed 15 (39.5) 17 (44.7) 6 (15.7) Employment Status, n (%) Full-time Part-time Student Not working or retired 11 (28.9) 5 (13.2) 3 (7.9) 19 (50.0) Seizures in the past 4 weeks, n (%) Yes 24 (63.2) Type of seizure usually experienced General Partial Other Unknown 26 (63.2) 11(29.0) 2 (5.3) 1 (2.6) Severity of recent seizures (in past 4 weeks) Very Mild Mild Severe Very Severe 5 (20.8) 8 (33.3) 7 (29.2) 4 (16.7)

Procedures Formative Evaluation Process Evaluation Focus groups Co-facilitated by a PWE Participants received materials in advance Discussed proposed materials and exercises Survey Client Satisfaction Scale Open-ended questions: what facilitated participation in the sessions, what they liked, what they did not like, what they would change

Data Analysis Qualitative Quantitative Focus groups (formative) A priori codes: acceptability, complexity, program components Emerging themes Open-ended survey questions (process) Focus group codebook Emerging themes Client Satisfaction Scale (process) Descriptive statistics Independent t-tests used to examine differences in satisfaction between: Delivery groups (phone vs Internet) Treatment groups (initial treatment vs waitlist control)

Results: Qualitative ThemeComments Acceptability Exercises were “functional” and “practical” Program had great value Learned useful skills Program helped more than antidepressants Complexity Difficulties participating due to: physical limitations time commitments feelings of guilt for taking time Scheduling Not connected with group Felt embarrassed or nervous

Results: Qualitative ThemeComments CBT exercises Benefits:  Useful to write down thoughts Issues:  Difficult to identify one thought and one feeling  Not enough variety in CBT homework activities Relaxation exercises Benefits:  Facilitates relaxation  Helpful in relieving stress  Can become aware of tension in the body Issues:  Feel more tense Mindfulness exercises Benefits:  Allows for time to quiet thoughts  Can do it anywhere Issues  Prefer a more direct link between epilepsy and mindfulness  Mindful attention is hard to do

Results: Qualitative ThemeComments Delivery Include in-person meeting at the end Incorporate phone and web aspects together Phone More intimate than web People talked over each other Smaller groups or longer session Web Anonymous Someone will always be on Low participation, lack of connection Difficulties navigating the site and using the discussion board Group setting Connect with group members because everybody had epilepsy Liked sharing with group members Learn from each other, see different perspectives When group ended, support taken away Living with Epilepsy Impact of epilepsy on lives and relationships Stigma

Results: Quantitative Mean CSQ score = (SD=3.411) Delivery Method: Web vs. Phone Phone group reported higher satisfaction (p=.08) Treatment Group: Initial group vs. Waitlist control No significant difference in satisfaction

Limitations Formative evaluation – small sample Process evaluation – attrition Recruited from tertiary epilepsy clinic Social desirability – evaluations conducted by study staff

Discussion Project UPLIFT materials and exercises viewed as: Beneficial Acceptable Taught needed skills Phone group more satisfied than Web group Barriers to participation: health problems, time restrictions, scheduling difficulties, and lack of connection Group design was a key component

Implications Mindfulness-based CBT program delivered over phone or Web perceived to be beneficial Building skills to reduce depressive symptoms Creating connections between PWE Provide hard-to-reach populations with an acceptable method of treatment for depression

Nancy J. Thompson, Ph.D., M.P.H. Rollins School of Public Health Emory University

Design—Outcome Evaluation Stratum 1: Pretest 8 wk phone Interim as usual Follow-up Stratum 2: Pretest 8 wk Web Interim as usual Follow-up Stratum 3: Pretest as usual Interim 8 wk phone Follow-up Stratum 4: Pretest as usual Interim 8 wk Web Follow-up Baseline Week 8 Week 16 Comparison Group: treatment-as-usual

Participation Screened Eligible (n=53) Assessments Completed Baseline (n=48) Completed Interim Survey (n=40) Completed Third Survey (n=35) Participated in at least one session Phone Intervention Group (n=12) Web Intervention Group (n=10) Phone Waitlist Group (n=10) Web Waitlist Group (n=10) 40 (75.5%) participated and completed the assessment following their participation

Mediators –Knowledge & Skills—developed with UPLIFT –Depression Coping Self-efficacy –Self Compassion Outcomes –Depression –mBDI –Patient Health Questionnaire (PHQ-9) –Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) –Quality of Life –SF-36 Physical and Mental Health QOL –Satisfaction with Life Measures

Data Analysis Baseline Differences Only mean Self Compassion was statistically significant (t = 3.00, df = 38, p = 0.005) Intervention group (mean = 19.7) Waitlist group (mean = 16.0) Repeated Measures ANCOVA Assessed the change in scores over time in the intervention and the waitlist groups Controlled all analyses for Self Compassion

Knowledge/Skills & Self-Efficacy MeasureTimeInterventionTAU WaitlistF interaction df 1,37 P-value Knowledge/Skills Pretest Interim * Depression Coping Self-Efficacy Pretest Interim

Depression: BDI UPLIFT vs. Waitlist (treatment as usual) F overall = 42.22, p=.0001 F interaction = 11.99, p=.001*

Depression: BDI By Intervention Type Phone vs. Web vs. Waitlist (treatment as usual) F overall = 41.65, p=.0001 F interaction = 5.93, p=.006*

No difference with Major Depressive Disorder at baseline or not (F 1,35 = 1.21, p = 0.279) Maintenance MeasureTimeIntervention Treatment -as-Usual Waitlist Fdfp-value BDIPretest Interim Posttest , * 0.297

Quality of Life MeasureTimeIntervention Tx As Usual Waitlist F interaction df 1,37 P-value Satisfaction with Life Pretest Interim Mental Health QOL Pretest Interim Physical Health QOL Pretest Interim <p<.10

QOL Results Consistent with the premises of mindfulness that suffering is not something to turn away from or something in need of fixing, that it is worthy of attention, that through attention we can see the ways in which we attach thoughts to the suffering that exacerbate it, and that letting go of these thoughts reduces suffering (Segal et al.)

Summary UPLIFT was effective in: Reducing Depressive Symptoms and teaching Knowledge and Skills associated with reducing depression Intervention group showed significant improvement compared to the waitlist Equally effective for those with and without MDD Reduction in depressive symptoms maintained Approached significance for Depression Coping Self- Efficacy and Satisfaction with Life Delivery Both phone and Web were significantly more effective in reducing depression than treatment-as-usual condition

Going Forward ~$1 million Challenge Grant--UPLIFT for Prevention Managing Epilepsy Well Network Participants in 4 states Georgia Michigan Texas Washington Application to other populations (MS, caregivers, workplace)