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如果你只剩下不到一年的生命,你想知道吗?一项针对欧洲七个国家公众对预后不良信息披露偏好的人口调查。

If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis.

作者信息

Harding R, Simms V, Calanzani N, Higginson I J, Hall S, Gysels M, Meñaca A, Bausewein C, Deliens L, Ferreira P, Toscani F, Daveson B A, Ceulemans L, Gomes B

机构信息

King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, London, SE5 9PJ, UK.

London School of Hygiene and Tropical Medicine, London, UK.

出版信息

Psychooncology. 2013 Oct;22(10):2298-305. doi: 10.1002/pon.3283. Epub 2013 Mar 18.

DOI:10.1002/pon.3283
PMID:23508972
Abstract

OBJECTIVE

With increasing European cancer deaths, clinicians must manage information regarding poor prognosis. This study aimed to determine European citizens' preferences, within a scenario of serious illness such as cancer with less than a year to live, for information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available, to measure variations between countries and to identify factors associated with preferences.

METHODS

A population-based cross-national telephone survey using random digit dialling in seven countries was conducted.

RESULTS

Among 9344 respondents, data revealed an international preference (73.9%) to always be informed in the scenario of having a serious illness such as cancer with less than a year to live. This varied from 67.6% in Italy to 80.7% in Flanders. A minority (21.1%) did not want such information unless they ask, or at all. People younger than 70 years (OR 0.72, 95% CI 0.62-0.83, p < 0.001), men (OR 1.23, 95% CI 1.10-1.37, p < 0.001), those with experience of illness (OR = 1.20. 95% CI 1.01-1.43, p < 0.05) and with more education (OR = 1.20, 95% CI 1.09-1.32, p < 0.001) were more likely to want to know of limited time left.

CONCLUSIONS

The models confirmed the influence of four factors in more than one country (age, gender, education and most concerning problem) and added 11 country-specific factors to which national policies and clinical practice should respond. These findings confirm a majority public preference to be informed in a scenario of poor prognosis. Policy clinical practice should facilitate elucidation and delivery of preferences. Evidence for effective communication skills-building interventions for clinicians is required.

摘要

目的

随着欧洲癌症死亡人数的增加,临床医生必须处理有关预后不良的信息。本研究旨在确定在患有癌症且生存期不足一年等严重疾病的情况下,欧洲公民对于预后不良、可能出现的症状和问题以及可用护理选项的信息披露的偏好,以衡量各国之间的差异,并确定与偏好相关的因素。

方法

在七个国家采用随机数字拨号进行了一项基于人群的跨国电话调查。

结果

在9344名受访者中,数据显示在患有癌症且生存期不足一年等严重疾病的情况下,国际上有73.9%的人倾向于始终被告知相关信息。这一比例在意大利为67.6%,在佛兰德为80.7%。少数人(21.1%)除非主动询问或根本不想了解此类信息。70岁以下的人(比值比[OR]为0.72,95%置信区间[CI]为0.62 - 0.83,p < 0.001)、男性(OR为1.23,95% CI为1.10 - 1.37,p < 0.001)、有患病经历的人(OR = 1.20,95% CI为1.01 - 1.43,p < 0.05)以及受教育程度较高的人(OR = 1.20,95% CI为1.09 - 1.32,p < 0.001)更有可能想知道剩余的有限时间。

结论

这些模型证实了四个因素在不止一个国家的影响(年龄、性别、教育程度和最关心的问题),并增加了11个特定国家的因素,国家政策和临床实践应予以应对。这些发现证实了大多数公众在预后不良的情况下希望被告知信息的偏好。政策和临床实践应促进对偏好的阐明和传达。需要有证据证明针对临床医生的有效沟通技能培训干预措施。

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