Abstract
Background
Studies indicate suboptimal patient understanding of the capabilities, lifestyle implications, and risks of LVAD therapy. This paper describes the development methodology and pilot-testing of a decision aid for Left Ventricular Assist Device (LVAD) placement, combining traditional needs-assessment with a novel user- centered approach.
Methods and Results
We developed the decision aid in line with the Ottawa Decision Support Framework (ODSF) and the International Patient Decision Aids Standards (IPDAS) for ensuring quality, patient-centered content. Structured interviews were conducted with patients, caregivers, candidates for LVAD treatment, and expert clinicians (n=71) to generate content based on patient values and decisional needs, and providers’ perspectives on knowledge needs for informed consent. The aid was alpha tested through cognitive interviews (n=5) and acceptability tested with LVAD patients (n=10), candidates (n=10), and clinicians (n=13). Patients, caregivers and clinicians reported they would recommend the aid to patients considering treatment options for heart failure. Patients and caregivers agreed that the decision aid is a balanced tool presenting risks and benefits of LVAD treatment and generating discussion about aspects of heart failure treatment that matter most to patients.
Conclusion
We identified gaps in knowledge about heart failure treatment options, including diagnosis, decision-making, surgery, post-operative maintenance and lifestyle changes. Challenges included presenting risks and benefits for informed decision making without frightening patients and circumventing reflection, and balancing an emphasis on LVAD with other alternative treatment options like comfort- directed palliative and supportive care.