Understanding quality of life in people waiting for a heart transplant

Living with an LVAD: Measuring health related quality of life in people living with a Left Ventricular Assist Device

People waiting for a heart transplant often benefit from a mechanical pump called a Left Ventricular Assist Device (LVAD) surgically attached to their heart. This is a major operation, and patients have to adapt to the changes this creates in their life. For example, carrying lots of equipment around, and sleeping attached to a monitor. This can have a negative impact on their quality of life whilst they wait for a transplant, which can be up to several years. To understand this impact, doctors and researchers can use Patient Reported Outcome Measures (PROMs). This involves the patient completing a short questionnaire about their treatment and their feelings about its outcomes. However, people currently living with an LVAD have said that existing PROMs don’t ask about symptoms that are relevant to them, and the standard survey used to measure ‘quality of life’ does not address the wide range of problems living with an LVAD presents. In this project, researchers want to work together with people living with an LVAD to develop a new PROM. They will conduct group workshops and individual interviews with people before and after having an LVAD to capture the range of issues they face. They will then turn these insights into questions that form the basis of a new PROM. The goal is to develop a PROM that better reflects the real experience of people living with an LVAD, to improve their quality of life now, and in the future.