Milne D J, Mulder L L, Beelen H C M, Schofield P, Kempen G I J M, Aranda S
Peter MacCallum Cancer Centre and School of Nursing, The University of Melbourne, Melbourne, Australia.
Eur J Cancer Care (Engl). 2006 May;15(2):125-32. doi: 10.1111/j.1365-2354.2005.00639.x.
This study describes the concordance between advanced cancer patients' self-report of quality of life and their caregivers' perception of the patients' quality of life at two time points. It is often necessary for health professionals to rely on information about the patients' quality of life that is provided by family caregivers (proxy), even though information from the patients is considered 'the gold standard'. Therefore, it is important to establish how reliable this proxy information is. Data were collected 4-6 weeks following diagnosis of recurrent or progressive disease, and again 12 weeks later. Fifty-one patients and their caregivers completed the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30), version 2.0 at both time points. Descriptive statistics were used to calculate patient and caregiver scores and describe the sample. The level of agreement between the two scores, the patients' self-report and the family caregivers' score, was calculated on the mean scores of each scale. In general, most caregivers were able to accurately rate the global quality of life, the level of functioning and the degree of symptom distress experienced by the person they were caring for, when compared with the patients' self-rating. Caregiver ratings for physical domains tended to be more in agreement with those of patients as compared with ratings of the psychosocial domains. This study suggests information from proxy raters is reliable when the proxy is a family caregiver, and this remains true over time.
本研究描述了晚期癌症患者在两个时间点对生活质量的自我报告与其照顾者对患者生活质量的认知之间的一致性。尽管患者提供的信息被视为“金标准”，但医护人员常常需要依赖家庭照顾者（代理人）提供的有关患者生活质量的信息。因此，确定这种代理信息的可靠性很重要。在复发性或进展性疾病诊断后4 - 6周收集数据，并在12周后再次收集。51名患者及其照顾者在两个时间点均完成了欧洲癌症研究与治疗组织（EORTC）生活质量问卷（QLQ - C30）第2.0版。使用描述性统计来计算患者和照顾者的得分并描述样本。根据每个量表的平均得分计算两个得分（患者的自我报告得分和家庭照顾者的得分）之间的一致性水平。总体而言，与患者的自我评分相比，大多数照顾者能够准确地对他们所照顾的人的总体生活质量、功能水平和症状困扰程度进行评分。与心理社会领域的评分相比，照顾者在身体领域的评分往往与患者的评分更一致。本研究表明，当代理人是家庭照顾者时，来自代理评分者的信息是可靠的，并且随着时间的推移依然如此。
