Educate, Nurture, Advise, Before Life Ends: Comprehensive Heartcare for Patients and Caregivers

ENABLE: CHF-PCENABLE, 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.

SYNERGY | ENABLE: CHF-PCA PALLIATIVE INTERVENTION FOR HEART FAILURE PATIENTS & CAREGIVERS

Marie Bakitas, DNSc, APRN; Alan Kono, MD; Peter Mason, MD; Deborah Johnson, MHA; Lisa Jackson, BA

BACKGROUND

NEXT STEPSAIM 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 outcomesEXPLORATORY AIM:Investigate selected mediators of ENABLE: CHF-PC intervention effects on HF patients’ quality of life, symptom burden, anxiety, and depression.

KEY INSIGHTS

SYNERGY PILOT STUDYCLINICIAN 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

ENABLE: CHF-PC INTERVENTION DESIGN

STUDY DESIGN

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

• WAVE 1 Treat 5 pt/cg dyads

Revise

• WAVE 2 Treat 5 more pt/cg dyads

Revise

Single Arm Pilot Study

(n=50 dyads)

COMPLETED:

Literature Review (Spring 2011) Chart Audit (Summer/Fall 2011) Clinician Focus Group Webinars (Fall 2012)

Fall 2012/Spring 2013

Summer 2013

Session 6 – Week 6

Creating a LegacyMonthly Follow-up

Bereavement Follow-up & Interview 8-12 weeks after

Patient’s death

Session 5 – Week 5Life Review: Forgiveness & Positive

Outlook

Session 4 – Week 4

Life Review: Accomplishments Begin Monthly Follow-up

Bereavement Follow-up & Interview 8-12 weeks after

Patient’s death

Session 3 – Week 3Communication, Support,

Decision-making, & Advance Care Planning

Communication, Support, Decision-making, & Advance Care

Planning

Session 2 – Week 2

Symptom Management & Self Care

Caregiver Self Care & Being a Partner in Symptom Management

Session 1 – Week 1

Problem-solving & COPE Attitude Caregiver Role, Problem-solving, & COPE Attitude

Charting Your Course Palliative Care Intervention w/ Nurse Coach (Phone)

Comprehensive Palliative Care Assessment (In Person)

Session 1 – Week 1

Session 2 – Week 2

Session 3 – Week 3

Session 4 – Week 4

Session 5 – Week 5

Session 6 – Week 6

CaregiverPatient

REFERENCES: 1. 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).

2. 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.