Section of Liaison Psychiatry and Palliative Medicine, Department of Comprehensive Diagnosis and Therapeutics, Division of Comprehensive Patient Care, Graduate School of Medical and Dental Sciences, Tokyo Medical and Dental University, Bunkyo-ku, Tokyo, Japan.
Psychooncology. 2011 Sep;20(9):953-60. doi: 10.1002/pon.1802. Epub 2010 Jul 11.
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.
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.
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).
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. Copyright © 2010 John Wiley & Sons, Ltd.
本研究使用包含心理社会和精神领域的多维健康相关生活质量（QOL）评估工具，考察日本终末期癌症患者及其主要家庭照顾者之间 QOL 评估的一致性程度和性质。
使用慢性病治疗功能评估-精神幸福感问卷评估患者的 QOL。研究对象为姑息治疗病房（PCU）的住院患者、申请入住 PCU 的门诊患者及其主要家庭照顾者。
从 197 名符合条件的患者-照顾者二人组中获得了 102 名患者的 QOL 评分。观察到患者整体 QOL 以及家庭对患者 QOL 的低估方面存在中度的患者-家庭一致性。家庭在患者 QOL 的可观察方面报告得更可靠，而对心理精神问题等主观方面的评估准确性较低。家庭往往低估患者 QOL 的社会方面，而大多数患者给予家庭支持的最高评分。精神领域，特别是关于信仰的方面，显示出最低的一致性。患者和家庭对患者 QOL 的评估之间系统性偏差的大小适中（>0.50）。
家庭评估患者心理社会和精神方面 QOL 的能力有限，这可能表明需要更好的方法或措施来评估患者生活的这些方面。系统性偏差大于早期研究。需要进一步调查以确定影响 QOL 评估中患者-家庭不和谐的因素，从而指导增强患者-照顾者一致性的有效干预措施。
