Perceptual consistency of pain and quality of life between hospice cancer patients and family caregivers: a pilot study

Abstract

Clinicians usually adjust medical management based on caregivers' observation when caring for seriously ill or cognitive-impaired patients. The purpose of this study is to research the differences in perceptual congruence of patients and caregivers when assessing patients' global pain (GP) and quality of life (QOL) in a hospice ward. From July 2002 to June 2004, hospice inpatients and their family caregivers were invited to participate in this study at a medical centre in Southern Taiwan. The survey was cross-sectional, incorporating patients' bio-psycho-social factors so as to understand their impacts on patients' pain perception and QOL. The bio-psycho-social factors included biological pain, physical dependence, financial difficulty, anxiety over family, existential meaning of life, uncontrolled outcome of disease and insufficient emotional support. Fifty-eight patient/caregiver dyads were recruited in the study. The mean of patients' self-reported GP was higher than caregivers' rating (5.9 +/- 1.7 vs. 5.1 +/- 1.9, p < 0.05); however, the score of patients' QOL was lower in the patients than in the caregivers (6.9 +/- 1.6 vs. 7.9 +/- 1.4, p < 0.001). The result of regression analyses showed that 'biological pain', 'religion' and 'gender' were independent variables for patients' GP; however, 'biological pain' and 'gender' were factors for patients' QOL. No psychosocial factor was revealed as a factor in patient's perception of GP or QOL in this survey. This study indicates that caregivers have the propensity to under-rate patients' pain and overvalue QOL; moreover, 'religion' and 'gender' influence patients' perception near the end-of-life. Therefore, reassessment and proper holistic approach are important in hospice care.