Decision Making in Advanced Heart Failure Larry A. Allen, MD, MHS Ginny Meadows, MSHI, RN-BC Professor, University of Colorado School of Medicine Caregiver #PCORI2018
Larry Allen, MD, MHS Disclosures Rela latio ionship ip Company ny(ies es) Speakers Bureau blank Advisory Committee blank Consultancy ACI Clinical, Amgen/Cytokinetics, Boston Scientific, Janssen Review Panel blank Board Membership blank Honorarium blank Ownership Interests blank 2 • November 15, 2018
A Caregiver’s Experience with End-Stage Heart Failure 3 • November 15, 2018
Presentation Outline 1. The LVAD Environment 1. What is an LVAD? 2. Tradeoffs 3. Decision Making in Serious Illness 2. Developing an LVAD Decision Aid 3. Testing Decision Aid’s Effectiveness 4. Dissemination of Decision Aid 4 • November 15, 2018
What is an LVAD? 5 • November 15, 2018
Tradeoffs 6 • November 15, 2018
McIlvennan, Magid, Ambardekar, Thompson, Matlock, Allen. Circ Heart Fail. 2014 Tradeoffs Benefits Risks/Burdens 7 • November 15, 2018
Preference-Sensitive Decision 8 • November 15, 2018
Marketing = Suboptimal “Education” Content analysis of 77 LVAD educational materials • 97% describe benefits • 53% mention any risk • 1% offer an alternative (palliative care) 9 • November 15, Iacovetto et al. Circ Qual Care Outcomes. 2014. 2018
Decision Making in Serious Illness Hi High-stake kes Emotion Unc Uncer ertainty Cognit itiv ive Biases es Careg egiver ers 10 • November 15, 2018
Dichotomy in Decision Approach 11 • November 15, McIlvennan et al. Circ Qual Care Outcomes. 2014. 2018
Developing an LVAD Decision Aid 12 • November 15, 2018
Developing an LVAD Decision Aid 13 • November 15, Thompson et al. JACC-HF. 2016. 2018
Testing Decision Aid’s Effectiveness: DECIDE-LVAD Trial 14 • November 15, McIvennan et al. J Cardiovasc Nurs. 2016. 2018
Study Design • Test effectiveness of decision aids • 6-site, stepped wedge trial • Phased rollout of intervention 15 • November 15, McIvennan et al. J Cardiovasc Nurs. 2016. 2018
Patients • 248 patients enrolled (from n=385 eligible); 190 caregivers blank Control (n=135) Intervention (n=113) Age, mean years (SD) 63.5 (9.7) 63.2 (10.2) Male 82.2% 86.7% White, non-Hispanic 79.1% 82.7% Some college or more 56.4% 69.2% On Disability 27.6% 32.0% Married 72.5% 65.4% Diagnosed < 2 years 11.9% 12.4% Enrolled in ICU 21.5% 26.5% INTERMACS 4-7 (p<0.01) 18.3% 44.6% 16 • November 15, Allen et al. JAMA-IM. 2018. 2018
Primary Outcome: Decision Quality 17 • November 15, Allen et al. JAMA-IM. 2018. 2018
Primary Outcome: Decision Quality – 1 18 • November 15, Allen et al. JAMA-IM. 2018. 2018
Secondary Outcome: 6-Month Implant Yin Yang 26% decrease in patient going on to LVAD Patients avoid aggressive Scare people out of 80% 54% therapy inconsistent with life-saving therapy their goals at end-of-life Undermine lucrative Limit use of a $300,000 services offered by treatment well-meaning programs 19 • November 15, Allen et al. JAMA-IM. 2018. 2018
Dissemination and Implementation: I-DECIDE-LVAD 20 • November 15, 2018
Dissemination of Decision Aid • Starts today! • Encourage adoption, implementation, maintenance of evidence- based patient-caregiver decision aids at all 173 LVAD programs across the U.S. • Evaluate successful and unsuccessful dissemination of decision aids 21 • November 15, 2018
www.patientdecisionaid.org Learn More • www.pcori.org • info@pcori.org • #PCORI2018 Larry.Allen@ucdenver.edu 22 • November 15, 2018
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