E ducate, N urture, A dvise, B efore L ife E nds:

1. SYNERGY | ENABLE: CHF-PC A PALLIATIVE INTERVENTION FOR HEART FAILURE PATIENTS & CAREGIVERS Marie Bakitas, DNSc, APRN; Alan Kono, MD; Peter Mason, MD; Deborah Johnson, MHA; Lisa Jackson, BA BACKGROUND ENABLE: CHF-PC INTERVENTION DESIGN KEY INSIGHTS Educate, Nurture, Advise, Before Life Ends: Comprehensive Heartcare for Patients and Caregivers ENABLE: CHF-PC ENABLE, the proactive, concurrent palliative care intervention for patients with a newly diagnosed advanced cancer, was developed through a series of studies over the past decade. The positive quality of life, mood, and survival outcomes1 led to a professional consensus statement recommending adoption of this concurrent care model nationally. Based on these positive results, a logical next step was to evaluate the ENABLE model in advanced heart failure patients as they typically lack access to such services until very late in their illness trajectory. Therefore we conducted a literature review, chart audit study of current heart failure patient palliative care consultations,2 and are currently conducting the Dartmouth SYNERGY Center for Clinical and Translational Science-funded pilot study that is depicted and described below. • CLINICIAN FOCUS GROUPS: • Discussed when to address advanced care issues in heart failure, especially in small, rural practices with limited palliative support • Recognized there is a stigma surrounding the word “palliative” • Overall, were supportive of the materials and design, but emphasized keeping it simple and phone-based • PT/CG DYAD SATISFACTION INTERVIEWS: • Participants wish this type of support had been available to them earlier in their illness trajectory, soon after diagnosis • Enjoyed the phone-based approach; felt it was a major benefit to not have to travel to receive this intervention • Overall, had positive feedback about intervention, with common suggestion of shortening the guidebooks to better focus the content Caregiver Patient Session 1 – Week 1 Session 2 – Week 2 Session 3 – Week 3 Session 4 – Week 4 Session 5 – Week 5 NEXT STEPS Session 6 – Week 6 • AIM 1: • Conduct a single arm pilot study of ENABLE: CHF-PC with 50 heart failure patient/caregiver dyads from two sites (Dartmouth n=25, University of Alabama-Birmingham n=25) in order to: • Determine the feasibility of recruiting and retaining patient/caregiver dyads for 24 weeks • Determine patient and caregiver satisfaction and need for additional intervention modifications • Describe longitudinal changes in HF patient and caregiver outcomes • EXPLORATORY AIM: • Investigate selected mediators of ENABLE: CHF-PC intervention effects on HF patients’ quality of life, symptom burden, anxiety, and depression. STUDY DESIGN SYNERGY PILOT STUDY • CLINICIAN FOCUS GROUPS (Fall 2012): • Feedback, critique, and insights were gained from several clinician focus group webinar discussions about the study population, opinions on palliative care, and the ENABLE study materials • Participants included CO-OP members: cardiologists, primary care practitioners, and hospitalists • PATIENT/CAREGIVER DYAD PILOT STUDY (Fall 2012-Present): • In two waves, 10 total patient/caregiver dyads are being guided through our phone-based palliative intervention by experienced Nurse Coaches -- Wave 1 completed January 2013; Wave 2 participants will be enrolled beginning February 2013 • Their feedback about the study guidebooks, content, and overall design will be instrumental in tailoring our intervention for a larger heart failure randomized trial comparing usual heart failure care • COMPLETED: • Literature Review (Spring 2011) • Chart Audit (Summer/Fall 2011) • Clinician Focus Group Webinars (Fall 2012) Summer 2013 Fall 2012/Spring 2013 REFERENCES: Bakitas M, Doyle Lyons K, Hegel MT, et al. Effects of a Palliative Care Intervention on Clinical Outcomes in Patients With Advanced Cancer: The Project ENABLE II Randomized Controlled Trial. Journal of the American Medical Association(2009). Bakitas M, MacMartin M, Trzepkowski K, et al. Palliative Care Consultations for Heart Failure Patients: How Many, When, and Why? Journal of Cardiac Failure (2013). IN PRESS ACKNOWLEDGMENTS: Thank you to our other research study team members and mentors: Sharona Sachs, MD; Virginia Beggs, MS, APRN; Sherry Duveneck, MS, RN; David Malenka, MD; and Allen Dietrich, MD; the Dartmouth CO-OP Project staff and clinicians; and for funding from Dartmouth SYNERGY. Single Arm Pilot Study (n=50 dyads)