Informing patients about cancer in Nepal: what do people prefer?
Informing patients about cancer in Nepal: what do people prefer?
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DOI：
10.1191/0269216306pm1154oa
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发表时间：
2006-01-01
影响因子：
4.4
通讯作者：
Watson, Max
中科院分区：
文献类型：
--
作者：
Gongal, Rajesh;Vaidya, Pradeep;Watson, Max
简介：传统上，尼泊尔的医生不与病人讨论恶性肿瘤的诊断。相反，讨论更有可能发生在家庭成员之间，然后他们会过滤病人收到的信息。本研究的目的是量化的实际披露发生的癌症诊断，通过对病人入院接受临终关怀的调查，并比较这与偏好癌症披露从一般人群的调查。目的：（a）确定被转介接受临终关怀的晚期癌症患者中，了解其疾病和预后的比例。(b)确定公众对恶性肿瘤诊断信息披露的态度，如果他们或近亲患上了这种疾病。(c)观察教育程度是否影响与癌症诊断披露相关的问题。方法：（a）对“尼泊尔临终关怀”收容的癌症病人进行为期一年的前瞻性调查，详细记录病人对自己的诊断了解多少。(b)对加德满都山谷及其周边地区的一般人群进行调查，问卷中询问以下两个问题：如果您被诊断患有癌症，您是否希望被告知您的癌症？如果一个近亲被诊断出患有癌症，你希望他们被告知他们的癌症吗？结果如下：在为期一年的研究期间，对96名在“尼泊尔临终关怀”住院的患者进行的调查显示，19名（20%）患者知道自己的疾病和疾病阶段; 16名（17%）知道自己患有癌症，但不知道自己的疾病进展或预后; 61名（63%）不知道自己疾病的性质、严重性或预后。一项对加德满都普通人群的调查显示，256名受访者中有204人（80%）希望被告知是否被诊断患有癌症，即使是无法治愈的癌症; 44人（17%）希望被告知只有在可以治愈的情况下才能被告知; 8人（3%）根本不想被告知这种诊断。结论：在尼泊尔，如果患者患上癌症，他们希望被告知的内容与癌症患者对自己疾病的了解之间存在明显的差距。在亚洲的情况下，这是不寻常的建议，西方的做法是不适当的，但这项研究，在一个非常非西方文化进行，显示病人希望知道他们的疾病是一个愿望，可以超越文化和种族差异。
Introduction: Traditionally, doctors in Nepal do not discuss a diagnosis of malignancy with their patient. Instead, discussion is more likely to take place with family members, who then filter the information that the patient receives. This study aims to quantify the amount of actual disclosure of a cancer diagnosis that takes place, through a survey of patients admitted for hospice care, and to compare this with preferences regarding cancer disclosure from a survey of the general population. Objectives: (a) To determine what proportion of patients, referred for hospice care with advanced cancer, who were aware of their disease and prognosis. (b) To determine the attitude among the public toward disclosure of information of a diagnosis of malignancy, if they or a close relative were to develop the disease. (c) To observe if educational attainment impacts on issues related to disclosure of a cancer diagnosis. Method: (a) Prospective survey of patients with cancer admitted to 'Hospice Nepal' over a one-year period, recording details of how much patients knew of their diagnosis. (b) Survey of the general population in and around the Kathmandu valley, with a questionnaire asking the following two questions: If you were diagnosed with cancer would you like to be informed of your cancer? If a close relative was diagnosed with cancer would you like them to be informed of their cancer? Results: A survey of the 96 patients admitted to 'Hospice Nepal' over the one-year study period showed that 19 (20%) of the patients had knowledge of both their disease and the stage of the disease; 16 (17%) knew that they had cancer but did not know about their disease progression or prognosis; 61 (63%) were unaware of the nature, seriousness or prognosis of their disease. A survey of the general population in Kathmandu showed 204 (80%) of the 256 respondents wanted to be informed if they were diagnosed with cancer, even if it was incurable; 44 (17%) wanted to be informed of such a diagnosis only if it was curable; and 8 (3%) did not want to be informed of such a diagnosis at all. Conclusion: In Nepal, there is a clear disparity between what patients would like to be told should they develop cancer, and what patients with cancer know about their disease. In the Asian context, it is not unusual to be advised that western practices of disclosure are inappropriate, yet this study, conducted in a very non-western culture, shows that the patient's wish to know about their illness is a desire which can transcend cultural and ethnic differences.