Hospitalization for acute decompensated heart failure (ADHF) often signals poor prognosis, both during and after hospitalization. Approximately 30-60% of adult patients with ADHF or chronic heart failure (HF) were affected by kidney dysfunction including acute kidney injury (AKI) or chronic kidney disease (CKD). This kidney dysfunction indicates more chronic multi-organ disease and can influence the risks and benefits of various HF treatments. Poor prognosis and complex clinical management are often experienced in patients with both ADHF and kidney dysfunction.
Patients and their families face challenges in making decisions regarding HF treatments and their potential benefits. There are limited studies focusing on the illness and care experience of adults with ADHF and kidney dysfunction. This qualitative study aims to explore the lived experience of such patients to improve care and decision-making.
This study design was conducted according to consolidated criteria for reporting qualitative research (COREQ) guidelines. Patients were recruited from a single academic health system called Kidney Injury and Heart Failure (KIND-HF). This qualitative study involved three hospitals in the Greater Seattle area, between February 2022 and February 2023. A total of 28 adults (mean age = 67 ± 12 years, male = 71%, female = 29%, black = 14%, white = 71%, Hispanic = 4%, non-Hispanic = 96%, mean estimated glomerular filtration rate [eGFR] = 35 ± 14 mL/min/1.73 m2) recently or currently hospitalized with ADHF and kidney dysfunction were included in this study.
All the patients were interviewed regarding their demographic characteristics, experience of illness, and clinical care during hospitalization and follow-up visits (3 months) after discharge. All the interviews were analyzed with inductive thematic analysis tools. Forty interviews were conducted among 28 patients, of which 10 patients finished both the inpatient and outpatient questionnaires.
This qualitative analysis elucidates the illness experiences and care of patients through four objectives: 1) widespread effects of functional limitations, 2) adjusting goals and changing expectations, 3) difficulties in interpreting clinical data, and 4) decision-making and relationships with healthcare providers. Patients described how symptoms had an impact on quality of life and social relationships. Some patients described how their health was deteriorating and the negative effect on long-term goals.
Most of the participants included were trying to understand their illness experience and care. This is particularly difficult for patients who internalize clinical data when it does not align with their lived experience of illness. Most patients also faced challenges in understanding kidney function. Moreover, some patients felt that clinicians were not fully aware of their most important concerns and priorities. Some patients stated that clinicians were not listening to their illness experiences. They also entrusted the clinicians regarding their treatment.
The limitations of this study include its primary focus on the experience of patients with ADHF and kidney dysfunction, not on patients with stable HF, with or without CKD. The study patients were recruited from only a single health care system which is limited to a smaller number of patients rather than a broader patient population. Additionally, the study aimed to analyze the experience of patients who were recently hospitalized, but it does not allow for specific comparisons of interviews such as at initial versus follow-up visits and in-patients versus out-patients.
“Our quality study highlighted the importance of education, relationships, and decision-making of clinicians regarding clinical management or care among patients with ADHF and kidney dysfunction,” says Nisha Bansal, MD, MAS, University of Washington, United States.
Reference: Bernacki GM, O’Hare AM, Assefa M, et al. Lived Experiences of Patients Hospitalized With Acute Decompensated Heart Failure and Kidney Dysfunction. JAMA Netw Open. 2025;8(1):e2455008. doi:10.1001/jamanetworkopen.2024.55008
