Uncertainty and Emotional Distress in Patients with Heart Failure and Their Primary Caregivers – A Novel Study

Background: Qualitative studies have reported feelings of uncertainty in patients with heart failure and their primary caregivers. Even though uncertainty has been associated with emotional distress in a variety of populations, there have not been any published quantitative studies exploring the relationship between uncertainty and emotional status in HF patients and their primary caregivers. Purpose: The purpose of this study was to determine if there were relationships among feelings of uncertainty and symptoms of depression and anxiety in HF patients and their primary caregivers. Methods: Using an exploratory, cross-sectional design, HF patients attending a Heart Function Clinic and their primary caregivers (n=48 pairs) completed the Mishel Uncertainty In Illness Scale-Community Version and the Hospital Anxiety and Depression Scale. Results: There was a trend for higher uncertainty scores in female versus male patients, and in patients living alone versus with their primary caregiver. Male versus female caregivers and caregivers with higher education levels reported higher uncertainty scores. There was a significant correlation between patient and caregiver uncertainty scores (rho=.387; p=.007). There was a trend for a relationship between uncertainty and symptoms of depression in patients (rho=.252; p=.085) and caregivers (rho= .251; p=.085). Conclusions: This was one of the first studies to measure uncertainty in both heart failure patients and their primary caregivers. Though the uncertainty scores provided new insight into these phenomena, limitations of the measurement tool created difficulties regarding interpretation of the findings. Challenges in understanding the potential relationship between uncertainty and depression in this study may be related to psychometric limitations of the Mishel Uncertainty in Illness Scale- Community Version. Uncertainty may actually be a more heterogeneous construct and a multidimensional tool may provide a more valid measurement in heart failure patients living in the community and their primary caregivers.