Development of a Decision Aid for Patients With Advanced Heart Failure Considering a Destination Therapy Left Ventricular Assist Device

Abstract

STRUCTURED ABSTRACT Objective We aimed to create decision aids (DAs) for patients considering destination therapy left ventricular assist device (DT LVAD). Background DT LVAD is a major decision for patients with end-stage heart failure. Patients facing decisions with complex tradeoffs may benefit from high-quality decision support resources. Methods Following the International Patient Decision Aid Standards (IPDAS) 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 semi-structured 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 utilizing a range of balanced testimonials. After 19 iterative versions of the paper DA and four versions of the video DA, final materials were made available for wider use. Conclusion We developed the first IPDAS-level DAs for DT LVAD. Given the extreme nature of this medical decision, we augmented traditional DA characteristics with non-traditional 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. UNSTRUCTURED ABSTRACT Destination therapy left ventricular assist device (DT LVAD) is a major decision for patients with end-stage heart failure. We aimed to create decision aids (DAs) to support patients and their caregivers considering DT LVAD. After developing initial drafts of paper and video DAs, we conducted alpha testing through interviews with 24 patients, 20 caregivers, and 24 clinicians and iteratively modified the DAs. This allowed us to integrate aspects critical to decision-making around highly invasive therapies for life-threatening diseases and to augment traditional DA characteristics with non-traditional DA features to attend to a spectrum of cognitive, automatic, and emotional aspects.

2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure

“…Pacjenci, u których zastosowano LVAD jako BTT, charakteryzują się podobnym lub lepszym czasem przeżycia po przeszczepieniu serca niż chorzy, którzy nie wymagali lub nie zostali poddani terapii pomostowej [599]. Mimo postę-pu technologicznego wciąż głównymi problemami, które wpływają na odległe rokowanie w przypadku MCS, pozostają: krwawienia, powikłania zakrzepowo-zatorowe (jedne i drugie mogą prowadzić do udaru mózgu), wykrzepianie w obrębie urządzenia, zakażenia przewodów zasilających i dysfunkcje samego urządzenia [599,[603][604][605][606]. Zaleca się, aby tego typu urządzenia były wszczepiane jedynie w ośrodkach z odpowiednio przeszkolonym zespołem kardiologów i kardiochirurgów w dziedzinie HF oraz z dostępem do ambulatoryjnej opieki w zakresie LVAD, z odpowiednio przeszklonym zespołem pielęgniarskim [607].…”

Palliative care in patients with heart failure

“…Decision aids have been developed for some heart failure treatments, including ICDs and LVADs (https://patientdecisionaid.org/). 112 However, decision aids are needed for other high stakes decisions such as transplantation, home inotropic therapy, and hospice. Future work should focus on the implementation of decisions aids to increase their use in clinical practice, 113 and the principles of palliative care can help guide this process.…”

Role of Palliative Care in Patients with Destination Therapy Left Ventricular Assist Device

“…Integrating palliative care early on, using decision aids to educate patients, regular follow up visits with PC to develop and periodically modify preparedness plan as needed, will improve patient participation in the decision making regarding their care [16,12]. This will lead to delivery of care that is congruent with their values and goals.…”