Hinton J
St. Christopher's Hospice, Sydenham, London, UK.
Soc Sci Med. 1996 Oct;43(8):1229-36. doi: 10.1016/0277-9536(95)00437-8.
To assess the accuracy of relatives' recollections of patients' terminal illness 71 out of 77 caring relatives were re-interviewed about 4 months after they and the patients had given regular interviews throughout care. Current and retrospective ratings of problems and feelings have been compared for agreement, using the kappa index. Several volunteered symptoms showed poor agreement, notably pain, anorexia and depression (kappa = 0.03-0.21), but vomiting, dyspnoea and immobility ratings agreed moderately well (kappa = 0.43-0.68). Current ratings from patients' and relatives' were always in better agreement with each other than with the relatives retrospective ratings. Bias sometimes altered apparent prevalence; pain was described as more severe in retrospect, but weakness, malaise, depression and relatives' stress were under-rated later. Ratings of "discomfort only" became less common for all symptoms retrospectively. The regular current assessments of patients' and relatives' emotional state also agreed only slightly with relatives' follow-up accounts of depression but somewhat better for anxiety. Patients stated knowledge of diagnosis, awareness and acceptance of dying matched the relatives' retrospective assessments moderately well (kappa = 0.70, 0.50 and 0.41). This study and other available evidence indicate that relatives' retrospective reports of terminal illness, measured against current ratings, are moderately reliable for some items but can vary or be potentially misleading over other aspects, including pain. This could affect evaluations of care.
为评估亲属对患者临终疾病记忆的准确性，在77位提供照料的亲属和患者在整个照料过程中接受定期访谈约4个月后，对其中71位亲属进行了再次访谈。使用kappa指数对当前和回顾性的问题及感受评分进行一致性比较。一些自发提及的症状一致性较差，尤其是疼痛、厌食和抑郁（kappa = 0.03 - 0.21），但呕吐、呼吸困难和行动不便的评分一致性中等（kappa = 0.43 - 0.68）。患者和亲属的当前评分彼此之间的一致性总是优于亲属的回顾性评分。偏差有时会改变明显的患病率；回顾时疼痛被描述得更严重，但虚弱、不适、抑郁和亲属的压力后来被低估。回顾时，所有症状中“仅不适”的评分变得不那么常见。对患者和亲属情绪状态的定期当前评估与亲属随访时对抑郁的描述也仅有轻微一致性，但对焦虑的一致性稍好一些。患者陈述的对诊断的知晓、对死亡的认知和接受程度与亲属的回顾性评估有中等程度的一致性（kappa分别为0.70、0.50和0.41）。本研究及其他现有证据表明，与当前评分相比，亲属对临终疾病的回顾性报告在某些项目上具有中等可靠性，但在其他方面可能存在差异或有潜在误导性，包括疼痛。这可能会影响对照护的评估。
