title: Elicitation of health state utilities in neuroendocrine tumours.
abstract: BACKGROUND
  Neuroendocrine tumours (NETs) are a rare form of neoplasm that can arise in most organs of the body and which share many common pathologic features. Although curative surgery can be conducted for patients with localised disease, once progression occurs and the disease becomes metastatic or un-resectable, treatment aims to extend life and maintain quality-of-life for as long as possible. The aim of the study was to elicit utilities for health state vignettes describing the burdens associated with receiving therapy for advanced NETs.
  
  
  METHODS
  Health state vignettes were developed by reviewing published literature and conducting in-depth interviews with patients and clinical experts. These states described the burden associated with both stable and progressive disease, in addition to the experience of a number of serious toxicities commonly associated with treatments (grade III/IV diarrhoea, hand-foot syndrome, hyperglycaemia, nausea/vomiting, pneumonitis, rash, stomatitis, and thrombocytopenia). One hundred members of the UK general public valued the states using the time trade-off methodology to determine utility values.
  
  
  RESULTS
  Stable disease had a utility value of 0.77 whilst disease progression was associated with a significant decline in health-related quality-of-life (HRQoL) and a value of 0.61. Toxicities experienced in the context of stable disease exhibited varying degrees of impact, with several being deemed as debilitating as disease progression (such as hand-foot syndrome [0.58] and stomatitis [0.56]).
  
  
  CONCLUSIONS
  Although vignette studies have been criticised for the difficulty in establishing their validity, the collection of health utilities in rare populations is challenging. The findings from this study suggest that advanced NETs is associated with a considerable HRQoL burden, both as a direct result of the disease and the potential of experiencing a number of severe adverse events. These values could assist in future economic evaluation processes.
authors.affiliation: Oxford Outcomes, an ICON plc Company, Seacourt Tower, West Way, Oxford, OX2 0JJ, UK. paul.swinburn@iconplc.com
authors.forename: P
authors.initials: P
authors.lastname: Swinburn
authors.forename: J
authors.initials: J
authors.lastname: Wang
authors.forename: D
authors.initials: D
authors.lastname: Chandiwana
authors.forename: W
authors.initials: W
authors.lastname: Mansoor
authors.forename: A
authors.initials: A
authors.lastname: Lloyd
mesh_terms: D000328:Adult; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D018358:Neuroendocrine Tumors / Q000628:therapy*; D057240:Patient Preference; D036301:Qualitative Research; D011788:Quality of Life; D035583:Rare Diseases / Q000628:therapy*; D011795:Surveys and Questionnaires; D006113:United Kingdom; D055815:Young Adult