A Multiple Case Study: Patient Decision-Making Regarding a Left Ventricular Assist Device (LVAD)

1. A Multiple Case Study: Patient Decision-Making Regarding a Left Ventricular Assist Device (LVAD) Judy Dillworth, PhD, RN, FCCM, NEA-BC Maureen Geary, MSN, RN, ANP-BC, CHFN Jennifer Pavone, MS, RN, AGACNP-BC Debra Robbins, MSN, RN, ACNP-BC

2. Background Heart Failure (HF) 6.5 million adults with HF in the U.S. 960,000 new cases HF diagnosed every year New Technology: Increased use of LVADs Bridge to transplant (BTT) Destination therapy (DT) Bridge to decision (BTD) To identify ways nurses can better assist and support patients with HF during the decision-making process

4. Research Issues Existing research on decision-making for LVAD and technology limited Homogenous patient populations Interviews usually conducted 3 months to 5 years post LVAD implantation(recall bias) Limitations with shared decision-making model: physician-patient dyad Many factors and perspectives not addressed

5. Objectives To explore the decision-making process of adult patients with advanced HF regarding the acceptance or declination of an LVAD: from multiple perspectives and in different contexts To identify ways nurses can better assist and support patients with HF during the decision-making process

6. Conceptual Model Decision-making models from different fields informed the development of an original theoretical model Salience of Survival Treatment Decision-Making Treatment Decision Outcome Adapted from Paula Haas’ Decision-making Model

7. Research Design Qualitative multiple case study to explore “how” patients make decisions, and examine relationships through detailed in-depth data collection involving interviews and multiple sources of information. Method guided by a conceptual model and identifies case descriptions and themes.

8. Sample Inclusion Criteria: Adults > 18 years old with NYHA class IIIb or NYHA class IV HF Made decision to accept or decline an LVAD Able to speak and understand English and engage in 60-minute interview Able to identify other participants (MD, RN, Care Partner) Exclusion Criteria: Patients who are too ill to participate Unable/unwilling to consent Unable to identify others willing to participate

9. Data Collection Procedures • Patient participants identified by HF Specialist/VAD Coordinators • PI notified • Maximum variation sampling • Patient interviews after decision was made, prior to LVAD • Obtained informed consent • PI conducted interview • Patients identified other participants

10. Data Collection Tools • Interview Guide (semi-structured, open-ended) “ Tell me about… yourself… your health in general…how you learned you had heart failure” • Pilot test with Key Informant • N = 31 in-depth interviews

11. Data Collection Tools Additional sources of data • Field notes • Observations • Informational handouts • Medical records • Artifacts

12. Data Analysis Thematic Analysis Analysis within cases Decision case summaries Analysis across cases Triangulation of Data Conceptual Model

13. Sample Characteristics

14. Results: Patient/Care partner

15. Results: Patient/Care partner

16. Results: Health care providers

17. Information-Sharing Component of Conceptual Model Perceived Severity of Illness Roles & Responsibilities Trust in MD, VAD team Self-Efficacy Acceptability of the Device Future Expectations HF Specialist VAD Coordinator Primary Nurses VAD team Patients with LVADs Relationships with family, clergy No LVAD Palliative Care Sources of Information Decision-making Factors Decision Outcome Cost-Benefit Analysis Patient Characteristics LVAD as DT Anticipation of new Technology LVAD as BTD History of Disease Signs & Symptoms Heart Transplant LVAD as BTT

18. Strengths and Limitations Limitations: Single academic medical center Small sample One decliner Strengths: Heterogeneous sample Patients interviewed during time from decision to LVAD Multiple sources of data to validate findings

19. Key Findings Implications for nursing practice and education Development of new conceptual model on patient decision-making regarding an LVAD Methodological and human subjects’ research with critically ill patients

20. Implications for Research Decision-making regarding an LVAD is more complex than reported in the literature Human subjects issues with research on critically ill patients must be carefully addressed Application of a conceptual model to future studies on patient decision-making regarding LVADs can facilitate better understanding Further research with different patient populations needed: decliners, patients without care partners

21. Implications for nursing practice and education Nurses play a significant role in shared decision making Nurses facilitate patient expression of concerns regarding: Acceptability of the device Self- care management and technology Transitions of care: long-term options and palliative care Nurses facilitate peer support such as other patients with LVADs

22. Acknowledgements Michele Shedlin, PhD, Chair Alex Reyentovich, MD Victoria Vaughan Dickson, PhD, CRNP, FAHA, FHFSA, FAAN Deborah Chyun, PhD, RN, FAHA, FAAN Ann Marie Mauro, PhD, RN, CNL, CNE Patients and Participants The Fred Schmidt Scholarship Award, NYU Rory Meyers College of Nursing Margaret McClure Scholarship, NY State Nurse’s Association

23. THANK YOU!