title: Patient Perspectives on Communication of Individualized Survival Estimates in Heart Failure.
abstract: BACKGROUND
  Despite the availability of validated risk scores for survival in heart failure (HF), individualized estimates are not typically provided directly to patients.
  
  
  RESULTS
  We explored patient perspectives regarding conveyance of individualized Seattle Heart Failure Model (SHFM) survival estimates. In 2014 and 2015, 24 HF patients completed a semistructured interview at the initial offering of SHFM survival estimates (baseline) and a follow-up interview. Themes emerging from questions of interest were identified: 1) preferences for receiving estimates: patients generally wished to see their SHFM estimates (acceptors; n = 17, and ideally would have received such information early after HF "diagnosis"; 2) reactions: viewing their personalized estimates restored some control and hope for most patients and rarely increased anxiety; 3) application: some acceptors found the information to be helpful in considering future plans, but its usefulness in specific decisions was restricted owing to perceived model limitations; 4) understanding uncertainty: participants contextualized estimates through observations that uncertainty is pervasive in life; acceptors qualitatively understood the population-based nature of the estimates.
  
  
  CONCLUSIONS
  The majority of patients valued receiving individualized prognostic survival estimates. Acceptors generally understood the nature of the information and found it to provide clarity, control, and hope rather than invoking confusion or anxiety.
authors.affiliation: University of Colorado School of Medicine, Aurora, Colorado.
authors.forename: Madhav
authors.initials: M
authors.lastname: Narayan
authors.affiliation: University of Colorado College of Nursing, Aurora, Colorado.
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Jones
authors.affiliation: University of Colorado School of Medicine, Aurora, Colorado.
authors.forename: Laura B
authors.initials: LB
authors.lastname: Portalupi
authors.affiliation: University of Colorado School of Medicine, Aurora, Colorado.
authors.forename: Colleen K
authors.initials: CK
authors.lastname: McIlvennan
authors.affiliation: University of Colorado School of Medicine, Aurora, Colorado.
authors.forename: Daniel D
authors.initials: DD
authors.lastname: Matlock
authors.affiliation: University of Colorado School of Medicine, Aurora, Colorado. Electronic address: larry.allen@ucdenver.edu.
authors.forename: Larry A
authors.initials: LA
authors.lastname: Allen
mesh_terms: D001007:Anxiety / Q000503:physiopathology; D003120:Colorado; D015897:Comorbidity; D054626:Consumer Health Information / Q000379:methods / Q000592:standards; D005260:Female; D006333:Heart Failure / Q000175:diagnosis / Q000401:mortality / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D010346:Patient Care Management / Q000379:methods / Q000706:statistics & numerical data; D057240:Patient Preference; D011379:Prognosis; D036301:Qualitative Research; D018570:Risk Assessment / Q000379:methods*; D012307:Risk Factors; D012720:Severity of Illness Index; D016019:Survival Analysis
keywords: Seattle Heart Failure Model; risk communication; survival estimate