Measurement of utilities associated with parenteral support requirement in patients with short bowel syndrome and intestinal failure

PURPOSE: Short bowel syndrome (SBS) is the main cause of intestinal failure. Intravenous supplementation (parenteral support [PS]) helps patients regain health but can affect patients' health-related quality of life (HRQoL). The value of health states associated with the number of days on PS per week is unknown in the United Kingdom. The objectives of the present study were to develop health state vignettes for SBS and PS, and to estimate health state utilities by using the time trade-off (TTO) technique. METHODS: Vignettes were developed and reviewed through various processes. Eight states described the impact of 0 days (weaned off PS) through to 7 days on PS; each state comprised the conditions, symptoms, treatments, and impacts related to EuroQol-5 dimensions. A sample of the UK general public viewed each state in interviews; they provided ratings using a visual analog scale and utility scores using the TTO. Participants completed background questionnaires. FINDINGS: One hundred participants rated and valued each health state. Visual analog scale and utility scores showed a steady decline for the health states associated with increasing numbers of days on PS. With "full health" equivalent to a utility score of 1, the most burdensome state was "7 days on PS" (mean [SD] utility score, 0.36 [0.35]), whereas weaned off ("0 days on PS") showed the least burden (0.82 [0.22]). IMPLICATIONS: More days of PS are perceived by members of the public to have an increasing negative impact on HRQoL. Therapies aimed at reducing the number of days on PS may be beneficial for improving patients' HRQoL.