title: Eliciting patient preferences, priorities and trade-offs for outcomes following kidney transplantation: a pilot best-worst scaling survey.
abstract: OBJECTIVE
  Eliciting preferences and trade-offs that patients may make to achieve important outcomes, can assist in developing patient-centred research and care. The pilot study aimed to test the feasibility of a case 2 best-worst scaling survey (BWS) to elicit recipient with kidney transplantation preferences after transplantation.
  
  
  METHODS
  Preferences for graft survival and dying, cancer, cardiovascular disease, diabetes, infection and side effects (gastrointestinal, weight-gain and appearance) were assessed in recipients with transplantation using a BWS (20 scenarios of nine outcomes). Participants chose 'best' and 'worst' outcomes. Responses were analysed using a multinomial logit model. Selected participants were interviewed.
  
  
  RESULTS
  Attribute coefficients and survey completion error rates.
  
  
  RESULTS
  81 recipients with transplantation were approached, and 39 (48%), mean age 50.5 years, completed the BWS. 4 (10%) surveys were invalid with major errors and of 35 remaining, 7 of 1400 (0.5%) choices were missing. -23 (59%) took >20 min to complete the survey. 1 was unable to finish, and 1 did not understand the survey. 2 (5%) found it very hard and 14 (35%) moderately hard. Most attribute coefficients were significant (p<0.05) and showed face validity. Graft survival was most important with normalised coefficients from 1 (95% CI 0.89 to 1.11) to 0.06 (95% CI -0.03 to 0.16) for 30 and 1 year duration, respectively. Attribute level coefficients decreased with increasing risk of adverse outcomes. Error rates of 20% and 2% were estimated for dominant attributes '100% risk of dying' and '30 years graft survival', respectively. 7 participants were interviewed regarding counterintuitive selection of '100% risk of dying' as a 'best' outcome. Misunderstanding, not linking dying to graft survival and aversion to dialysis were reasons given.
  
  
  CONCLUSIONS
  Recipients with transplant recipients successfully completed a complex case 2 BWS with attribute coefficients having face validity with respect to duration of graft survival and risk of adverse outcomes. Areas for refinement to reduce complexity in design have been identified.
authors.affiliation: Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Martin
authors.initials: M
authors.lastname: Howell
authors.affiliation: Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia School of Public Health, The University of Sydney, Sydney, New South Wales, Australia Centre for Transplant and Renal Research, Westmead Hospital, Westmead, New South Wales, Australia.
authors.forename: Germaine
authors.initials: G
authors.lastname: Wong
authors.affiliation: Institute for Choice, University of South Australia Business School, North Sydney, New South Wales, Australia.
authors.forename: John
authors.initials: J
authors.lastname: Rose
authors.affiliation: Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Allison
authors.initials: A
authors.lastname: Tong
authors.affiliation: Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Jonathan C
authors.initials: JC
authors.lastname: Craig
authors.affiliation: School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Howard
mesh_terms: D000328:Adult; D000368:Aged; D002755:Choice Behavior; D005240:Feasibility Studies; D005260:Female; D006801:Humans; D016030:Kidney Transplantation / Q000009:adverse effects; D008297:Male; D008875:Middle Aged; D057240:Patient Preference; D018802:Patient-Centered Care; D010865:Pilot Projects; D011795:Surveys and Questionnaires; D055815:Young Adult
keywords: HEALTH ECONOMICS; STATISTICS & RESEARCH METHODS; TRANSPLANT MEDICINE
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