BACKGROUND: There are limited management options available for people with Type III intestinal failure (IF), with home parenteral nutrition (HPN) being the main treatment option. The aim of this research is to compare patient preferences in managing Type III IF using time trade-off (TTO) methodology and to determine which factors have the greatest impact on health-related quality of life (HRQoL).METHODS: An interviewer-administered telephone survey was conducted on a cross-sectional cohort of 19 HPN participants. The survey was designed to measure HRQoL using a TTO methodology. Four different treatment options were presented, and participants decided how many years of life they would trade to have access to the treatment and hence a different health state. The 4 scenarios included reduction in line infections, optimization of care, small bowel growth (teduglutide), and intestinal transplantation. Health state utility scores were calculated.RESULTS: The median health utility score for optimization of care and small bowel growth (teduglutide) were lowest (0.5; range 0-1) meaning a greater desire for this treatment. Intestinal transplant had the highest median utility score (1.0; range 0-1) indicating less willingness for this treatment option.CONCLUSIONS: This is the first known study to use TTO methodology assessing treatment options in people with IF requiring HPN. Results indicate people requiring HPN make careful decisions when considering treatment options. Facilities providing HPN services should focus on optimization of current care, which is highly valued by their patients.
Activities of Daily Living Adult