Kim Soyeun, Ko Youngjin, Kwon Sinyoung, Shin Dong-Yeop, Kim Cheol Hyeon, Yang Sung Hyun, Cho Seong-Jin, Na Im Il
Department of Family Medicine, Korea Cancer Center Hospital, Korea Institute of Radiological and Medical Sciences, Seoul, Korea.
Psychooncology. 2014 Nov;23(11):1300-6. doi: 10.1002/pon.3565. Epub 2014 May 12.
We investigated family caregivers' awareness of disease status and attitude toward disclosure of disease progression compared with those of cancer patients and explored the potential association between family caregivers' attitudes and patients' quality of life (QOL).
We carried out a survey using self-administered questionnaires answered by pairs of family caregivers and patients diagnosed with advanced cancer (n = 136 pairs). To assess patients' QOL, we used the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire.
More than half of family caregivers (54%) did not have full knowledge of patients' advanced stage and goal of therapy. Positive attitudes toward disclosure were less common in family caregivers than in patients (59.4% and 85.4%, respectively; p < 0.01). The family caregivers' positive attitudes toward disclosure were inversely associated with patients' low functional scores (emotion [p = 0.04] and cognition [p = 0.02]) and high symptom scores (nausea and vomiting, pain, and insomnia; p < 0.05). However, in most QOL scales, patients' attitudes were not significantly associated with functioning and symptom scores.
A large portion of family caregivers may not know the patients' exact status. This study also suggests that the family caregivers' attitudes may differ from patients' and may be associated with patients' QOL.
我们调查了家庭照顾者与癌症患者相比对疾病状态的知晓情况以及对疾病进展披露的态度，并探讨了家庭照顾者态度与患者生活质量（QOL）之间的潜在关联。
我们采用自行填写的问卷对136对被诊断为晚期癌症的家庭照顾者和患者进行了调查。为评估患者的生活质量，我们使用了欧洲癌症研究与治疗组织生活质量问卷。
超过一半的家庭照顾者（54%）对患者的晚期阶段和治疗目标了解不全面。家庭照顾者中对披露持积极态度的情况比患者中少见（分别为59.4%和85.4%；p<0.01）。家庭照顾者对披露的积极态度与患者较低的功能评分（情绪[p=0.04]和认知[p=0.02]）以及较高的症状评分（恶心呕吐、疼痛和失眠；p<0.05）呈负相关。然而，在大多数生活质量量表中，患者的态度与功能和症状评分无显著关联。
很大一部分家庭照顾者可能不知道患者的确切状况。本研究还表明，家庭照顾者的态度可能与患者不同，且可能与患者的生活质量相关。
