DEVELOPMENT OF A DECISION AID FOR PATIENTS WITH ADVANCED HEART FAILURE CONSIDERING A DESTINATION THERAPY LEFT VENTRICULAR ASSIST DEVICE

Purpose: Destination therapy left ventricular assist device (DT LVAD) is a major decision for patients with end-stage heart failure. Patients facing decisions with complex tradeoffs, such as with DT LVAD, may benefit from high-quality decision support resources. Thus, we aimed to systematically create novel decision aids (DAs) for DT LVAD.

Method: Following the International Patient Decision Aid Standards (IPDAS) guidelines and based on a prior needs assessment with stakeholders (patients, caregivers, and clinicians), an environmental scan, and a systematic review of LVAD outcomes, we developed initial drafts of paper and video DAs. With input from patients, caregivers, and clinicians through alpha testing, we iteratively modified the paper and video DAs to ensure acceptability.  

Result: Draft paper then video DAs were constructed. We conducted semi-structured interviews with 23 patients, 19 caregivers, and 24 clinicians to assess the readability, bias, and usability of the DAs, in addition to facilitating recommendations for modifications. These interviews, along with previously conducted background work, allowed us to integrate aspects unique to DAs around highly-invasive therapies for life-threatening diseases, including: addressing emotion and fear of death, presenting the declination of LVAD as a clear option, using gain frames focused on living rather than dying, highlighting palliative and hospice care as resources for all patients, integrating the caregiver role and perspectives, and utilizing a broad range of testimonials in a balanced manner. Ultimately, we went through 19 iterative versions of the paper DA and four versions of the video DA until final materials were produced. The final DAs were perceived overall to be acceptable by all stakeholder groups.  

Conclusion: We developed the first IPDAS-level paper and video DAs for DT LVAD. Given the extreme nature of this medical decision, we augmented traditional DA characteristics with non-traditional DA features based on our needs assessment to attend to a spectrum of cognitive, automatic, and emotional aspects of end-of-life decision making. The lessons learned during this development process will likely inform other invasive therapies offered for chronic progressive illnesses. Future work will test whether these DAs improve decision quality and can be implemented and disseminated in routine practice.