Assessment of Self-reported Prognostic Expectations of People Undergoing Dialysis: United States Renal Data System Study of Treatment Preferences (USTATE)

IMPORTANCE: Prognostic understanding can shape patients’ treatment goals and preferences. Patients undergoing dialysis in the United States have limited life expectancy and may receive end-of-life care directed at life extension. Little is known about their prognostic expectations. OBJECTIVE: To understand the prognostic expectations of patients undergoing dialysis and how these relate to care planning, goals, and preferences. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional survey study of 993 eligible patients treated with regular dialysis at 31 nonprofit dialysis facilities in 2 metropolitan areas (Seattle, Washington, and Nashville, Tennessee) between April 2015 and October 2018. After a pilot phase, 1431 eligible patients were invited to participate (response rate, 69.4%). To provide a context for interpreting survey participants’ prognostic estimates, United States Renal Data System standard analysis files were used to construct a comparison cohort of 307 602 patients undergoing in-center hemodialysis on January 1, 2006, and followed for death through July 31, 2017. Final analyses for this study were conducted between November 2018 and March 2019. EXPOSURES: Responses to the question “How long would you guess people your age with similar health conditions usually live?” (10 years, or not sure). MAIN OUTCOMES AND MEASURES: Self-reported (1) documentation of a surrogate decision-maker, (2) documentation of treatment preferences, (3) values around life prolongation, (4) preferences for receipt of cardiopulmonary resuscitation and mechanical ventilation, and (5) desired place of death. RESULTS: Of the 993 survey respondents, the mean (SD) age was 62.6 (13.9) years, and 438 (44.1%) were women. Overall, 111 (11.2%) survey respondents selected a prognosis of fewer than 5 years, 150 (15.1%) respondents selected 5 to 10 years, 328 (33.0%) respondents selected more than 10 years, and 404 (40.7%) were not sure. By comparison, 185 427 (60.3%) prevalent US in-center patients undergoing hemodialysis died within 5 years, 58 437 (19.0%) died within 5 to 10 years, and 63 738 (20.7%) lived more than 10 years. In analyses adjusted for participant characteristics, survey respondents with a prognostic expectation of more than 10 years (vs