Patient Perspectives on Communication of Individualized Survival Estimates in Heart Failure

Despite the availability of validated risk scores for survival in heart failure (HF), individualized estimates are not typically provided directly to patients.

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.

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.