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癌症告知——来自埃及一家儿科肿瘤病房的记录

Cancer disclosure-account from a pediatric oncology ward in Egypt.

作者信息

El Malla Hanan, Steineck Gunnar, Ylitalo Helm Nathalie, Wilderäng Ulrica, El Sayed Elborai Yasser, Elshami Mohammad, Kreicbergs Ulrika

机构信息

Division of Clinical Cancer Epidemiology, Department of Oncology, Sahlgrenska University Hospital, Gothenburg, Sweden.

Department of Social Work, University of Gothenburg, Gothenburg, Sweden.

出版信息

Psychooncology. 2017 May;26(5):679-685. doi: 10.1002/pon.4207. Epub 2016 Aug 5.

Abstract

OBJECTIVE

Informing the child about his/her diagnosis and treatment plan is essential; research has shown that it is related to the patient's quality of life and adherence to medication.

METHODS

For 7 months during 2008 (February to September), 2 study-specific questionnaires were constructed and administered to 304 parents of children diagnosed with cancer at the Children's Cancer Hospital Egypt.

RESULTS

Among the 313 eligible parents of children diagnosed with cancer, 304 (97%) answered the first questionnaire and 281 (92%) answered the second questionnaire. We found that nearly three-quarters (72%) of the parents had their child's cancer diagnosis communicated by the physician. Among the 72%, the rate of the children present with the parent or parents during the disease disclosure conversation was 39% (n = 85/219). The majority of the children were in the age group 5-18 years (55%).

CONCLUSIONS

Our findings indicate that cancer disclosure at the Children's Cancer Hospital is to a certain degree common; yet even when disclosure does take place, it is mainly in the absence of the child. Moreover, the information provided during the conversation may not be fully comprehended by the parent or the child because of the physician's misleading use of terms when disclosing the disease. Therefore, better practice should be developed for disease disclosure, and proper communication should be established between the patients and the provider; patient autonomy should also have an influence in the clinical practice.

摘要

目的

告知儿童其诊断结果和治疗方案至关重要;研究表明,这与患者的生活质量和用药依从性相关。

方法

在2008年的7个月期间(2月至9月),编制了两份针对该研究的问卷,并对埃及儿童癌症医院304名被诊断患有癌症儿童的家长进行了问卷调查。

结果

在313名符合条件的被诊断患有癌症儿童的家长中,304名(97%)回答了第一份问卷,281名(92%)回答了第二份问卷。我们发现,近四分之三(72%)的家长是由医生告知其孩子的癌症诊断结果的。在这72%的家长中,在疾病告知谈话期间有家长陪伴孩子在场的比例为39%(n = 85/219)。大多数儿童年龄在5至18岁之间(55%)。

结论

我们的研究结果表明,埃及儿童癌症医院的癌症诊断告知在一定程度上较为普遍;然而,即使进行了告知,也主要是在孩子不在场的情况下。此外,由于医生在告知疾病时用词不当,谈话中提供的信息家长或孩子可能并未完全理解。因此,应制定更好的疾病告知规范,患者与医疗服务提供者之间应建立恰当的沟通;患者自主权也应在临床实践中发挥作用。

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