Patient Reported Outcomes Measures in Advanced Heart Failure Patients

Purpose Patients are the best source of information about how they feel and how care affects them. Patient-reported outcome measures (PROMs) are standardized, validated questionnaires completed by patients to measure their perception of their well-being and health status. Aim: To create a cost-effective, valid, and sensitive PROMs data capture process for patients with Advanced Heart Failure (AHF) to understand to what extent a Heart Transplant (HT) affects their quality of life Methods A prospective data collection model has been designed for AHF patients eligible for HT based on the Outcomes Management and Evaluation (OME) system developed by Cleveland Clinic. Two types of data will be collected: 1) Patient condition-specific PROMs; 2) OME for HT and potential Bridge to Transplant Therapies (BTT). Patient condition-specific PROMs will be measured using the Kansas City Cardiomyopathy Questionnaire and social determinants of health (e.g., smoking habits and drug abuse). The OME data for BTT include: A)Pre-BTT details (e.g., UNOS status),B)Post-BTT details (e.g., post-transplant mechanical support). The OME data for HT include:A)Pre-transplant details (e.g., UNOS status),B)Donor characteristics (e.g., ischemic trigger greater than 4 hours),C)Post-transplant details (e.g., post-transplant mechanical support). The process for collecting PROMs is divided into 5 phases (see fig). Results Data will start to be collected approximately in November 2020 until June 2021, aiming to have the first results analyzed by July 2021 Conclusion This is one of the first PROMs processes implemented in an AHF program to the best of our knowledge. Our goal is to imbed PROMs into our workflow and create an umbrella of PROMs across the entire Heart and Vascular Institute to measure the quality of care from our patients’ perspective to improve the clinical decision-making process.