ABSTRACT
Over the past 30 years, home parenteral nutrition (HPN) and intestinal transplantation (ITx) have become clinically feasible treatments for children and adults with intestinal failure (IF) [1,2]. Medical and surgical advancements have signi—cantly improved the outcomes in this —eld, and have enabled clinicians to devote attention not only to the quantity of their patients’ lives, but also to their health-related quality of life (HRQOL). Relative to other more mature areas of medicine, there is a paucity of HRQOL data and even validated tools for IF and ITx patients. As multidisciplinary teams gain additional experience, there are increasing opportunities to develop a better understanding of the issues and challenges facing these patients and their families. In this chapter, we aim to review the components and measurements of HRQOL, explain what constitutes a good HRQOL instrument, highlight important practical points and unique challenges faced when implementing HRQOL assessment, and identify future research needs.
