Comparison of patient and family assessments of quality of life of terminally ill cancer patients in Japan.

OBJECTIVE: This study examined the extent and the nature of agreement on health-related quality of life (QOL) assessments between terminally ill cancer patients and their primary family caregivers in Japan, using a multidimensional QOL instrument including psychosocial and spiritual domains.
METHODS: The Functional Assessment of Chronic Illness Therapy-Spiritual well-being questionnaire was used to assess patients' QOL. Study subjects were inpatients of a palliative care unit (PCU), outpatients who applied for admission to the PCU, and their primary family caregivers.
RESULTS: QOL ratings were obtained from 102 of 197 eligible patient-caregiver dyads. A moderate level of patient-family concordance on patients' overall QOL as well as families' underestimation of patients' QOL were observed. Families reported on observable domains of patients' QOL more reliably and assessed subjective aspects, such as psychospiritual concerns less accurately. Families tended to underrate the patients' social aspect of QOL, whereas most patients gave the highest rating on support from their families. The spiritual domain, particularly regarding faith, showed the least agreement. The size of the systematic bias between patient and family assessments on the patients' QOL was moderate (>0.50).
CONCLUSIONS: Families' limited ability to assess psychosocial and spiritual aspects of patients' QOL may suggest the need for better approaches or measures to assess these aspects of a patient's life. The systematic bias was larger than in earlier studies. Further investigation is needed to identify factors affecting patient-family discord on QOL assessments to guide effective interventions to enhance patient-caregiver agreement.