Researcher(s)
- Cole Bilbrough, English, University of Delaware
Faculty Mentor(s)
- Marshala Lee-McCall, iREACH, ChristianaCare
Abstract
Background: Advance care planning (ACP) helps patients communicate their preferences for future medical care. Heart failure has an unpredictable course, making early ACP especially important. However, little is known about how soon ACP is documented after heart failure first appears in electronic health records (EHRs).
Methods: We conducted a retrospective cohort study using the All of Us Research Program, a national research resource that combines standardized EHR data from participating healthcare organizations with demographic and health information provided by participants from diverse communities across the United States. The study included adults with newly documented heart failure from 2005–2023, at least one year of prior EHR data, and no previously documented ACP. We measured the first documented ACP event within 90, 180, and 365 days. Death was treated as a competing event. We also examined whether ACP timing differed across demographic and clinical groups.
Results: Among 10,990 adults, 116 had documented ACP within one year. The estimated one-year cumulative incidence was 1.12% (95% confidence interval: 0.93%–1.34%), with 176 deaths treated as competing events. One-year incidence was low among both male and female participants at 1.52% and 0.74%, respectively. Because ACP events were uncommon, most adjusted demographic estimates were imprecise, limiting our ability to draw firm conclusions about disparities. Results remained similar when using a broader ACP definition and a later study period.
Conclusion: The first documentation of heart failure may provide an important opportunity to begin ACP. The low overall incidence warrants broader efforts to promote and document ACP among all patients with heart failure. Future research should examine clinical notes for conversations that were not formally coded and include larger samples or additional serious illnesses to estimate potential demographic disparities more accurately.