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关于预后和临终关怀信息披露的偏好:对一个中低收入国家晚期癌症患者的调查。

Preferences regarding disclosure of prognosis and end-of-life care: A survey of cancer patients with advanced disease in a lower-middle-income country.

作者信息

Zafar Waleed, Hafeez Haroon, Jamshed Arif, Shah Mazhar Ali, Quader Ainul, Yusuf M Aasim

机构信息

Department of Cancer Registry and Clinical Data Management, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan

Department of Internal Medicine, Shaukat Khanum Memorial Cancer Hospital & Research Centre, Lahore, Pakistan.

出版信息

Palliat Med. 2016 Jul;30(7):661-73. doi: 10.1177/0269216315625810. Epub 2016 Jan 14.

Abstract

BACKGROUND

Cancer patients' preferences regarding disclosure of prognosis and end-of-life care remain under-reported from low- and middle-income countries where cancer poses an increasing demand on scarce healthcare resources. A better knowledge of these preferences can help in achievement of shared treatment goals.

AIM

To survey preferences of adult cancer patients regarding disclosure of prognosis and end-of-life care

DESIGN

A multidimensional questionnaire was developed to survey consecutively sampled patients. A fifth of the participants completed a repeat survey 3 months later.

SETTING/PARTICIPANTS: Adult patients at a specialist cancer center in Pakistan.

RESULTS

In total, 520 patients were surveyed initially (participation rate 98.6%) and 100 completed the repeat survey. Three in five respondents wanted a healthcare provider to give them detailed information about their prognosis and life expectancy. Those who wanted information withheld were significantly more likely to be female, to have a lower socioeconomic status, or to have lung cancer. Only two in five patients agreed that they wanted to die at home and more than 90% wanted all possible care till end-of-life. Yet, a little over half also agreed that they did not wish to be placed on a ventilator. In rank ordering preferences about end-of-life, respondents ranked "religious wellbeing" as the highest and "avoiding inappropriate prolongation of dying" as the lowest of six options.

CONCLUSION

A majority of adult cancer patients surveyed in this study wanted a truthful disclosure about their disease prognosis and expressed a preference for hospital-based care at end-of-life. Healthcare providers should find ways to tailor prognostic information to patients' expressed information needs.

摘要

背景

在癌症对稀缺医疗资源需求日益增加的低收入和中等收入国家,癌症患者对于预后信息披露和临终关怀的偏好仍未得到充分报道。更好地了解这些偏好有助于实现共同的治疗目标。

目的

调查成年癌症患者对预后信息披露和临终关怀的偏好。

设计

设计了一份多维问卷,对连续抽样的患者进行调查。五分之一的参与者在3个月后完成了重复调查。

地点/参与者:巴基斯坦一家专业癌症中心的成年患者。

结果

最初共调查了520名患者(参与率98.6%),100名完成了重复调查。五分之三的受访者希望医疗服务提供者提供有关其预后和预期寿命的详细信息。希望隐瞒信息的受访者更可能为女性、社会经济地位较低或患有肺癌。只有五分之二的患者同意他们希望在家中去世,超过90%的患者希望在临终前得到所有可能的治疗。然而,略超过一半的患者也同意他们不希望使用呼吸机。在对临终偏好进行排序时,受访者将“宗教福祉”列为六个选项中的最高位,将“避免不适当延长死亡时间”列为最低位。

结论

本研究中接受调查的大多数成年癌症患者希望如实披露其疾病预后,并表示倾向于在临终时接受医院护理。医疗服务提供者应设法根据患者表达的信息需求调整预后信息。

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