Author + information
- Received July 30, 2015
- Revision received August 25, 2015
- Accepted September 19, 2015
- Published online December 1, 2015.
- Jocelyn S. Thompson, MA∗,
- Daniel D. Matlock, MD, MPH∗,†,‡,
- Colleen K. McIlvennan, DNP, ANP∗,‡,§,
- Amy R. Jenkins, MS∗ and
- Larry A. Allen, MD, MHS∗,‡,§∗ ()
- ∗Adult and Child Center for Health Outcomes Research and Delivery Science, University of Colorado School of Medicine, Aurora, Colorado
- †Division of General Internal Medicine, University of Colorado School of Medicine, Aurora, Colorado
- ‡Colorado Cardiovascular Outcomes Research Consortium, Denver, Colorado
- §Division of Cardiology, University of Colorado School of Medicine, Aurora, Colorado
- ↵∗Reprint requests and correspondence:
Dr. Larry A. Allen, Division of Cardiology, University of Colorado Denver, Academic Office 1, Room 7109, 12631 East 17th Avenue, Mail Stop B130, Aurora, Colorado 80045.
Objectives This study aimed to create decision aids (DAs) for patients considering a destination therapy left ventricular assist device (DT LVAD).
Background Insertion of a DT LVAD is a major decision for patients with end-stage heart failure. Patients facing decisions with complex trade-offs may benefit from high-quality decision support resources.
Methods In accordance with the International Patient Decision Aid Standards guidelines and based on a needs assessment with stakeholders, we developed drafts of paper and video DAs. With input from patients, caregivers, and clinicians through alpha testing, we iteratively modified the DAs to ensure acceptability.
Results We conducted semistructured interviews with 24 patients, 20 caregivers, and 24 clinicians to assess readability, bias, and usability of the DAs. Stakeholder feedback allowed us to integrate aspects critical to decision making around highly invasive therapies for life-threatening diseases, including addressing emotion and fear of death, using gain frames for all options that focus on living, highlighting palliative and hospice care, integrating the caregiver role, and using a range of balanced testimonials. After 19 iterative versions of the paper DA and 4 versions of the video DA, final materials were made available for wider use.
Conclusions We developed the first International Patient Decision Aid Standards—level DAs for DT LVAD. Given the extreme nature of this medical decision, we augmented traditional DA characteristics with nontraditional DA features to address a spectrum of cognitive, automatic, and emotional aspects of end-of-life decision making. Not only are the DAs important tools for those confronting end-stage heart failure, but the lessons learned will likely inform decision support for other invasive therapies.
- decision aid
- destination therapy
- heart-assist devices
- heart failure
- patient-centered care
- shared decision making
This project was supported in part by the Patient-Centered Outcomes Research Institute under its Communication and Dissemination Program (No. CDR 1310-06998), as well as by the University of Colorado Department of Medicine Early Career Scholars Program. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Patient-Centered Outcomes Research Institute or the National Institutes of Health. Dr. Matlock is supported by a career development award from the National Institute on Aging (K23AG040696). Dr. Allen is supported by the National Heart, Lung, and Blood Institute of the National Institutes of Health under award number K23HL105896. Dr. Allen has served as a consultant to Novartis, Johnson & Johnson, and Janssen; and has received a grant from PCORI. All other authors have reported that they have no relationships relevant to the contents of this paper to disclose.
- Received July 30, 2015.
- Revision received August 25, 2015.
- Accepted September 19, 2015.
- American College of Cardiology Foundation