Quality of Life and Outcomes

Over the past few years we have been collecting quality of life data to understand how an intestinal transplant impacts on our patients. We have used three different questionnaires to record this including both generic, that have the advantage of being applicable across many different conditions, and condition specific questionnaires, allowing us compare patients with the same condition. From the generic ones, we have found that following intestinal transplant patients overall score with life rises from an average of 40% (+/- 21%) to 73% (+/- 7%), with an improvement in move around, to do everyday activities including caring for themselves and their pain or discomfort levels. In addition, from the disease specific questionnaire there were marked improvement in ability to travel, body image, concerns regarding their health and the future and the ability to eat food again. This is incredibly exciting to see the improvement that intestinal transplant brings. We are continuing to collect data and our aim in the next few years is to develop a short patient centred questionnaire that reflects what patients feel are important questions for us to ask them.