title: Valuation of transfusion-free living in MDS: results of health utility interviews with patients.
abstract: BACKGROUND
  This study measured how myelodysplastic syndrome (MDS) patients value transfusion independence (TI), reduced transfusions (RT) and transfusion-dependence (TD) using health utility assessment methodology.
  
  
  METHODS
  47 MDS patients were interviewed, US (n = 8), France (n = 9), Germany (n = 9) and the UK (n = 21), to elicit the utility value of TI, RT and TD. Health states were developed based on literature; patient forum discussions; and were validated by a hematologist. Face-to-face interviews used the feeling thermometer Visual Analogue Scale (VAS) and the Time Trade-Off (TTO) method to value the health states on a 0 (dead) to 1 (perfect health) scale. Socio-demographic, clinical, and quality-of-life (EQ-5D) characteristics were surveyed to describe the patient sample.
  
  
  CONCLUSIONS
  The mean age was 67 years (range: 29-83); 45% male, 70% retired; 40% had secondary/high school education, or higher (32%), and 79% lived with family, a partner or spouse, or friends. The mean time from MDS diagnosis was 5 years (range:1-23). Most patients (87%) received previous transfusions and 49% had received a transfusion in the last 3 months. Mean EQ-5D index score was 0.78; patients reported at least some problem with mobility (45%), usual activities (40%), pain/discomfort (47%), and anxiety/depression (34%). Few patients had difficulty understanding the VAS (n = 3) and TTO (n = 4) exercises. Utility scores for TI were higher than for RT (0.84 vs. 0.77; p < 0.001) or TD (0.84 vs. 0.60; p < 0.001). Three patients rated TD worse than dead. Corresponding VAS scale scores were 78 vs. 56; (p < 0.001), and 78 vs. 31 (p < 0.001), respectively.
  
  
  CONCLUSIONS
  Patients value TI, suggesting an important role for new treatments aiming to achieve greater TI in MDS. These results can be used in preference-based health economic evaluation of new MDS treatments, such as in future cost-utility studies.
authors.affiliation: Covance, Leeds, UK. agota.szende@covance.com
authors.forename: Agota
authors.initials: A
authors.lastname: Szende
authors.forename: Caroline
authors.initials: C
authors.lastname: Schaefer
authors.forename: Thomas F
authors.initials: TF
authors.lastname: Goss
authors.forename: Kathy
authors.initials: K
authors.lastname: Heptinstall
authors.forename: Robert
authors.initials: R
authors.lastname: Knight
authors.forename: Michael
authors.initials: M
authors.lastname: Lübbert
authors.forename: Barbara
authors.initials: B
authors.lastname: Deschler
authors.forename: Pierre
authors.initials: P
authors.lastname: Fenaux
authors.forename: Ghulam J
authors.initials: GJ
authors.lastname: Mufti
authors.forename: Sally
authors.initials: S
authors.lastname: Killick
authors.forename: Alan F
authors.initials: AF
authors.lastname: List
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001803:Blood Transfusion / Q000523:psychology / Q000706:statistics & numerical data*; D005060:Europe; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D009190:Myelodysplastic Syndromes / Q000628:therapy; D010147:Pain Measurement; D011788:Quality of Life