The majority of persons diagnosed with Short Bowel Syndrome (SBS) must receive intravenous nutrition supplementation, also known as parenteral support (PS). Due to the time and energy required for PS, patient’s daily activities are restricted impacting function and quality of life. No utility values are reported in the literature. The objective of this study was to measure the utility values associated with PS in persons with SBS.
A web-based time trade-off (TTO) survey was conducted with the general Canadian adult population. Health states evaluated represented PS need in terms of days/hours of PS per week (PS0 to PS7). The PS7 health state was further divided in PS7Low and PS7High according to the number of liters administered. Panelists were recruited by a research firm in Canada. The sample obtained was representative of the Canadian population and provincial distribution. Due to the orphan nature of the condition, a short video describing SBS, PS and the TTO questionnaire was presented. Each participant was asked to evaluate three different health states. Mean utility values were calculated per PS state and correlation was determined.
Among the 1,277 respondents, 260 were excluded for incomplete survey and 218 were excluded for inconclusive answers. 799 respondents in total were included in the analysis. Half (49.2%) of respondents were females and the mean age (SD) was 50.5 (16.1) years. Increased use of PS was correlated with utility decrement (R2=0.94) with a lower utility being associated with increased use of PS. The following utility values were obtained: PS0=0.74, PS1= 0.70, PS2= 0.65, PS3= 0.61, PS4= 0.57, PS5= 0.52, PS6= 0.48, PS7Low=0.44 and PS7High= 0.39.
This study demonstrates that an increased need of PS is highly correlated with a utility decrement. This is the first study to report utility values associated with PS in persons with SBS.
© 2016 Published by Elsevier Inc.