ArticleCirculation. Cardiovascular quality and outcomes2024
Prognosis Communication in Heart Failure: Experiences and Preferences of End-Stage Heart Failure Patients and Care Partners.
Article in Circulation. Cardiovascular quality and outcomes, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- Validation of the short-form quality care questionnaire - palliative care in Brazilian patients with heart failure eligible for palliative care.BMC palliative care · 2026Article
- Understanding of Prognosis and Estimation of Mortality in Ambulatory Patients With Heart Failure.JAMA network open · 2026Article
- Navigating heart failure: a plain-language summary to empower people with heart failure.Heart failure reviews · 2025Review
- Nothing Is Wrong With My Heart: Patient-Reported Understanding of Heart Failure With Preserved Ejection Fraction.Journal of the American Heart Association · 2025Article
- Lived Experiences of Patients Hospitalized With Acute Decompensated Heart Failure and Kidney Dysfunction.JAMA network open · 2025Article
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Authors and funding
9 authors.
Funding
Abstract
backgroundPatients with heart failure (HF) overestimate survival compared with model-predicted estimates, but the reasons for this discrepancy are poorly understood. We characterized how patients with end-stage HF and their care partners understand prognosis and elicited their preferences around prognosis communication.
methodsWe conducted in-depth, semistructured interviews with patients with end-stage HF and their care partners between 2021 and 2022 at a tertiary care center in Michigan. Participants were asked to describe barriers they faced to understanding prognosis. All interviews were coded and analyzed using an iterative content analysis approach.
resultsFifteen patients with end-stage HF and 15 care partners participated, including 7 dyads. The median patient age was 66.5 years (range, 31-80) and included 9 of 15 (60%) White participants and 9 of 15 (60%) were males. Care partners included 10 of 15 (67%) White participants and 6 of 15 (40%) were males. Care partners were partners (n=7, 47%), siblings (n=4, 27%), parents (n=2, 13%), and children (n=2, 13%). Most patients demonstrated a poor understanding of their prognosis. In contrast, care partners commonly identified the patient's rapidly declining trajectory. Patients and care partners described ineffective prognosis communication with clinicians, common barriers to understanding prognosis, and similar suggestions on improving prognosis communication. Barriers to understanding prognosis included (1) conversation avoidance by physicians, (2) information inconsistency across different physicians, (3) distractions during prognosis communication due to emphasis on other conditions, and (4) confusion related to the use of medical jargon. Most patients and care partners wanted discussions around prognosis to begin early in the course of the disease, repeated routinely using layperson's terms, incorporating both quality of life and survival assessments, and involving care partners. Both patients and care partners did not expect precise survival estimates.
conclusionsPatients with end-stage HF demonstrate a poor understanding of their prognosis compared with their care partners. Patients and care partners are open to discussing prognosis early, using direct and patient-centered language.
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