"I Guess I'm On Alert All The Time": Dyadic Symptom Appraisal In Heart Failure With And Without An LVAD

Abstract

Background Symptom monitoring is an essential component of heart failure (HF) self-care for HF patients with and without a left ventricular assist device (LVAD). Attention to HF symptoms by the caregiving dyad is important for prompt recognition and response. The purpose of this analysis was to characterize patient and caregiver agreement within dyads on appraisals of patient HF symptoms, and explore dyadic agreement across dyads, comparing LVAD and non-LVAD experiences. Methods This was a post-hoc analysis of a mixed-methods descriptive study of HF caregiving in dyads with and without an LVAD. We recruited HF patients and their caregivers from outpatient HF and LVAD clinics at Johns Hopkins Hospital. We administered surveys and qualitative interviews with each dyad. Symptom burden was measured using the Heart Failure Somatic Perception Scale (HFSPS; higher scores = higher burden). We used raw difference scores to quantify the magnitude and direction of agreement within dyads. Dyads with difference scores of <|5| were considered in agreement. Dyads with difference scores ≥|5| were grouped based on the direction of agreement ([+] caregiver scored patient symptoms higher; [-] patient scored their symptoms higher). We integrated these appraisal patterns with qualitative quotations relevant to symptom appraisal. Results We enrolled 10 LVAD and 12 non-LVAD dyads. There were 7 dyads with agreement and 15 dyads with disagreement of which 6 had [+] agreement scores and 9 had [-] agreement scores. Qualitative data analysis revealed a theme common to both types of dyad relevant to symptom appraisal: “monitoring/vigilance”. However, the monitoring/vigilance described differed between LVAD and non-LVAD dyads (figure). In LVAD dyads, vigilance related to monitoring of the LVAD while non-LVAD dyads described monitoring symptoms and signs of disease progression. Dyads with agreement spoke less about monitoring/vigilance than dyads with disagreement. Dyads with higher caregiver rating of symptoms spoke of specific actions they take to monitor the patient's symptoms. Dyads with higher patient rating of symptoms described monitoring and vigilance in ways that were similar to stress. Conclusions Although quantitative comparisons were not powered to detect statistical significance, this study showed differences in HF symptom appraisal agreement and symptom monitoring behaviors between LVAD and non-LVAD dyads. Additional investigation may suggest targets for dyadic interventions to improve symptom burden, appraisal, and management. Symptom monitoring is an essential component of heart failure (HF) self-care for HF patients with and without a left ventricular assist device (LVAD). Attention to HF symptoms by the caregiving dyad is important for prompt recognition and response. The purpose of this analysis was to characterize patient and caregiver agreement within dyads on appraisals of patient HF symptoms, and explore dyadic agreement across dyads, comparing LVAD and non-LVAD experiences. This was a post-hoc analysis of a mixed-methods descriptive study of HF caregiving in dyads with and without an LVAD. We recruited HF patients and their caregivers from outpatient HF and LVAD clinics at Johns Hopkins Hospital. We administered surveys and qualitative interviews with each dyad. Symptom burden was measured using the Heart Failure Somatic Perception Scale (HFSPS; higher scores = higher burden). We used raw difference scores to quantify the magnitude and direction of agreement within dyads. Dyads with difference scores of <|5| were considered in agreement. Dyads with difference scores ≥|5| were grouped based on the direction of agreement ([+] caregiver scored patient symptoms higher; [-] patient scored their symptoms higher). We integrated these appraisal patterns with qualitative quotations relevant to symptom appraisal. We enrolled 10 LVAD and 12 non-LVAD dyads. There were 7 dyads with agreement and 15 dyads with disagreement of which 6 had [+] agreement scores and 9 had [-] agreement scores. Qualitative data analysis revealed a theme common to both types of dyad relevant to symptom appraisal: “monitoring/vigilance”. However, the monitoring/vigilance described differed between LVAD and non-LVAD dyads (figure). In LVAD dyads, vigilance related to monitoring of the LVAD while non-LVAD dyads described monitoring symptoms and signs of disease progression. Dyads with agreement spoke less about monitoring/vigilance than dyads with disagreement. Dyads with higher caregiver rating of symptoms spoke of specific actions they take to monitor the patient's symptoms. Dyads with higher patient rating of symptoms described monitoring and vigilance in ways that were similar to stress. Although quantitative comparisons were not powered to detect statistical significance, this study showed differences in HF symptom appraisal agreement and symptom monitoring behaviors between LVAD and non-LVAD dyads. Additional investigation may suggest targets for dyadic interventions to improve symptom burden, appraisal, and management.