Left ventricular assist device therapy: family caregivers' stress, perceived burden and quality of life.

Abstract

Background: Individuals implanted with left ventricular assist devices (LVADs) as bridge to transplant or as destination therapy expect to be discharged home. Responsibility for providing care to those patients has fallen almost exclusively to family caregivers. Yet there is a paucity of research on the experience of family caregivers of LVAD patients. This study assessed the burden and quality of life (QOL) of caregivers over a period of up to 6 months. The influence of stress and select demographic variables on those outcomes was also evaluated. Methods: Subjects recruited from a single LVAD center in the upper Midwest were required to be > 18 years old, the identified primary caregiver of an LVAD patient, and able to read and write English. Each was asked to complete a questionnaire at baseline and again at 2, 6, 14 and 22 weeks after the baseline measure. Measures included demographics, the Caregiver Distress Scale, the Caregiver Involvement Instrument, the Caregiver Burden Assessment, the Cantril Ladder scale, the CES-D, and the SF-12. Results: A total of 46 subjects provided data for analysis. The average caregiver was a 58 year old Caucasian female spouse of a bridge-to-transplant patient with a HeartMate II living with the patient and one other adult with an average income of $40,000-$59,999. Stress was mildly to moderately elevated over the entire period. Baseline burden was measured at levels that warranted intervention in up to 41% of participants, but decreased steadily over time (p=.04). Sixty to eighty-five percent of subjects reported below average quality of life that was largely static across the study. Stress was negatively correlated with QOL. (p=.004) Conclusions: Interventions to reduce stress are most likely to improve caregiver quality of life.