The hospice patient's primary caregiver: What is their quality of life?

Objectives: The purpose of this study was to (1) assess the quality of life (QOL) of the primary caregivers of hospice patients and (2) to analyze the ability of the hospice staff to accurately judge caregiver QOL. Methods: A longitudinal pilot study of QOL of caregivers of patients entering hospice was undertaken. Caregivers and hospice personnel completed numerous questionnaires every 2 weeks until patient death. Global QOL and component constructs, as well as the demands of illness on the caregiver and profile of moods, were assessed. Simple descriptive statistics at each time point and summary measures (area under the curve) were calculated to describe the QOL profile of caregivers and staff perceptions of the caregivers. Cronbach's alpha coefficient was applied to verify tool internal consistency in a hospice population. Correlation coefficients were supplemented by Bland-Altman procedures for comparing scales measuring the same construct to compare the scores given by caregivers about themselves and staff ratings of the caregivers. The study had 80% power to detect an intracase difference between caregiver and staff ratings of the caregiver of 0.4 times the standard deviation using a two-sided paired t test with a 5% type I error rate. Results: Caregiver QOL was relatively high and stable over time. Caregiver's QOL was correlated with the patient's overall QOL/hospice staff accurately evaluated caregiver QOL. Conclusions: By drawing attention to issues that affect the caregiver, we can improve delivery of hospice care and positively impact QOL for both caregiver and patient. Linear analog self-assessment scales are valuable tools for hospice staff to assess caregivers.