How Do Patients with Heart Failure Perceive Their Symptoms?

Effective symptom perception may prevent unplanned hospitalizations. However, patients with heart failure (HF) often face challenges that interfere with symptom perception. Little is known about how patients perceive their HF symptoms. Aim: To describe how patients with HF perceive symptoms through the processes of monitoring, awareness, and evaluation. Methods: Using a qualitative descriptive design, we conducted semi-structured in-person interviews with a purposeful sample of adults experiencing an unplanned hospitalization for a HF symptom exacerbation. We elicited how patients monitor, become aware of, and evaluate symptoms prior to hospitalization. Data were analyzed using directed qualitative content analysis. We identified symptom monitoring behaviors, types of symptoms experienced, and success or failure in linking the symptoms to HF. Categories/subcategories were developed by grouping codes based on similarities and differences. Themes were conceptualized at a higher level of abstraction by combining categories. Results: A sample of 40 patients (mean age 62 years, 50% male, median HF duration 6 years, 95% HF stage C/D) was enrolled. Patients demonstrated Body listening , which was the use of active and individualized symptom monitoring tactics that involved observing for bodily changes outside one’s usual range. Trajectory of bodily change involved the patterns or characteristics of bodily changes as they became apparent. Three subthemes— sudden and stunning change , gradual change , and fluctuating change emerged as different Trajectories of bodily changes were identified. The same types of bodily changes could develop in different trajectories. Patients simultaneously experienced all or some of the trajectory types of various symptoms. Patients evaluated symptoms through an Exclusionary process , sequentially attributing symptoms to a cause through a cognitive process of excluding possible causes until the most plausible cause remained. Conclusion: Three major themes emerged from an in-depth description of the complex symptom perception processes of monitoring, awareness, and evaluation. Identifying where patients have difficulties in symptom perception will facilitate the development of tailored interventions.