caregiver, heart failure, proxy, symptoms



  1. Quinn, Christina RN, DNS
  2. Dunbar, Sandra B. RN, DSN, FAAN, FAHA
  3. Higgins, Melinda PhD


Background: Caregivers (CGs) of heart failure (HF) patients are increasingly assuming greater responsibilities in symptom assessment, evaluation, and decision making and may be asked to serve as proxies. The purpose of this study was to examine the degree of congruence between HF patients and their primary CG on symptom assessment and self-care management behaviors.


Methods: The sample consisted of 70 HF patients receiving home healthcare and their designated CG. Patients were primarily between 40 and 85 years of age and female (60%). Caregivers were predominately female (76%) and spouses (43%). Congruence in symptom assessment and management between HF patients and their designated CGs was measured in this descriptive cross-sectional study using the Heart Failure Symptom Survey and Self-care of Heart Failure Index.


Results: The Spearman correlation coefficient and concordance correlation coefficient were used to assess the degree of congruence on symptom evaluation scores from the Heart Failure Symptom Survey. Dyads had the strongest correlations on ratings of the HF patients' symptoms of extremity edema, difficulty concentrating, and dizziness. Lower congruence (Spearman correlation <0.40) was found on feeling depressed, shortness of breath at night, and shortness of breath when lying down. Scores on the Self-care of Heart Failure Index self-care management and self-care confidence scales were not significantly different within the HF dyads.


Conclusions: Based on moderate levels of correlations on most HF symptoms in this study, the CG as proxy appears to be a reasonable substitute for patient responses in a community setting. However, greater family preparation for symptom assessment is warranted to improve congruence for future symptom assessment.