Heart Transplant Candidates Perceptions of the Newly Implemented United Network for Organ Sharing Heart Allocation System: An Eye Opener

Purpose In October 2018, United Network for Organ Sharing (UNOS) implemented a new allocation system for heart transplantation. The purpose was to better stratify the most medically urgent heart transplant candidates and address geographic disparities in donor access. In this survey of listed patients at our center, we investigate the candidate's perspective on the new changes to the heart allocation system. Methods A standardized scale-response survey was designed and delivered to heart transplant candidates currently listed at the Miami Transplant Institute. Results Thirty-six out of 39 (92%) of heart transplant candidates responded to the standardized survey questionnaire. Despite one on one patient education, provision of education material, one-third of candidates felt that they had no understanding of the changes and only half had some understanding. Even while maintaining a higher status in the new allocation system, the higher the candidates’ listing status was with the original allocation system, the stronger it correlated with unsatisfactory responses. We observed that 100% of status 1A, 50% of status 1B, and 25% of status 2 candidates felt that their new statuses moved their priority lower on the list. The candidates’ perception about the ability of the new system to provide the most critically ill candidates a broader range of donor hearts also demonstrated a similar trend. The largest disagreement and unhappiness was found among the status 1A (100%) and status 1B (28%) groups, while no disagreement was found among statuses 2 (0%) and 7 (0%). Candidates were further asked about changes in their perceived wait times under the new system. 100% of status 1A, 56% of status 1B, and 50% of status 2 candidates felt that their wait time would be longer. As expected, this correlated to unhappiness in 100% of status 1A, 33.3% of status 1B, and 25% of status 2 candidates. Conclusion Overall there was limited understanding and a sense of dis-satisfaction amongst the majority of the listed patients with regards to the new heart allocation system. A less favorable perception was observed in the patients who were listed in the higher priority statuses in the former system. Therefore, we propose that more candidate education is needed to improve their understanding and satisfaction regarding the new allocation system.