Importance: For patients hospitalized with acute decompensated heart failure (ADHF), the presence of kidney dysfunction can substantially shape prognosis and treatment options. Yet little is known about the lived experiences of these medically vulnerable patients.
Objective: To elicit accounts of the illness and care experiences of patients currently or recently hospitalized with ADHF and kidney dysfunction in order to identify potential opportunities to improve care.
Design, setting, and participants: This qualitative study of patients with ADHF and kidney dysfunction was conducted at 3 hospitals within an academic health system serving the Greater Seattle area between February 2022 and February 2023. Patients were recruited from those enrolled in a parent study of patients hospitalized with ADHF. A sample of patients who had either acute kidney injury and/or chronic kidney disease were invited to participate in 1 or more qualitative interviews during hospitalization or approximately 3 months postdischarge.
Main outcomes and measures: Transcribed interviews were analyzed using inductive thematic analysis.
Results: A total of 40 interviews were conducted among 28 participants. The mean (SD) participant age was 67 (12) years, and 8 (28%) identified as female, 4 as Black [14%], and 20 as White [71.4%]. Qualitative analysis resulted in 4 dominant themes: (1) pervasive impact of functional limitation, (2) adapting goals and changing expectations, (3) struggling to interpret clinical information, and (4) decisional roles and relationships with clinicians. Participants described how their illness had shaped their day-to-day function, life space, and sense of self. They did not always speak in explicit terms about prognosis but most recognized limits on longevity and life options and had started to rethink their priorities. Most participants were engaged in a process of trying to understand the medical aspects of their illness and care, often drawing on their own embodied experience of illness. They had particular difficulty grasping the significance of kidney dysfunction and connecting this to the symptoms they were experiencing. Participants did not always feel equipped or empowered to engage in clinical decision-making, tending to trust the clinicians caring for them.
Conclusions and relevance: Interviews with adults currently or recently hospitalized with ADHF and kidney dysfunction highlight the importance of improving education, communication, and engagement in care among members of this medically vulnerable group.