Tabchi Samer, El Rassy Elie, Khazaka Aline, El Karak Fadi, Kourie Hampig Raphael, Chebib Ralph, Assi Tarek, Ghor Maya, Naamani Lara, Richa Sami, Ghosn Marwan, Kattan Joseph
Faculty of Medicine, Hematology - Oncology Department, Hotel Dieu de France University Hospital, Saint Joseph University, Beirut, Lebanon.
Department of Oncology, Jules Bordet Institute, Free University of Brussels (ULB), 1 Héger Bordet Street, Brussels, Belgium.
Qual Life Res. 2016 Jun;25(6):1597-604. doi: 10.1007/s11136-015-1201-6. Epub 2015 Dec 10.
Despite worldwide trends toward optimizing full disclosure of information (DOI), the prevailing belief that cancer diagnosis should be concealed from patients, for their own good, has endured for a substantial period of time in Middle Eastern communities.
This study would assess the reliability of the Arabic translated version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-INFO 25). The study was also designed to quantify DOI to Lebanese cancer patients and determine patient satisfaction with this DOI. Moreover, we compared the differences in the level of information among groups based on clinical and biographical variables.
A sample of patients, being treated for a variety of malignancies, was prospectively evaluated. A physician interviewed patients using the Arabic version of the EORTC QLQ-INFO 25, on the day of hospitalization for chemotherapy, before treatment was administered.
In total 201 patients were interviewed. The translated version of the EORTC QLQ-INFO 25 showed high reliability when assessed using Cronbach's alpha coefficients for internal consistency with values scoring higher than 0.7 for all scales and the full questionnaire. There was a considerable lack of information provided to the participants with 38.8 % being unaware of their diagnosis and more than half being uninformed about the extent of their disease. Paradoxically, 86.5 % of patients expressed their satisfaction about the amount of information they received and 89.5 % believe the information provided was helpful. Further analysis showed no significant association between gender, marital status, cancer site and stage and the amount of information received. However, age and level of education were associated with DOI such as younger and more educated patients received more information. Older patients were also found to be the most satisfied with the information they received, despite having less access to information.
Although a high proportion of patients were not properly informed about their diagnosis, the overwhelming majority were satisfied with the amount of information they received and believed it was useful, reflecting the complexity of Middle Eastern cultural influences on cancer patients' perspectives.
尽管全球都在趋向于优化信息的充分披露(DOI),但认为为了癌症患者自身的利益,应向其隐瞒癌症诊断的这种普遍观念,在中东社区持续存在了很长一段时间。
本研究将评估欧洲癌症研究与治疗组织生活质量问卷(EORTC QLQ - INFO 25)阿拉伯语翻译版本的可靠性。该研究还旨在量化向黎巴嫩癌症患者提供的信息披露情况,并确定患者对这种信息披露的满意度。此外,我们根据临床和个人信息变量比较了不同组之间信息水平的差异。
对正在接受各种恶性肿瘤治疗的患者样本进行前瞻性评估。在化疗住院当天,治疗开始前,由一名医生使用EORTC QLQ - INFO 25的阿拉伯语版本对患者进行访谈。
总共访谈了201名患者。当使用克朗巴哈系数评估EORTC QLQ - INFO 25的翻译版本时,其内部一致性显示出高可靠性,所有量表和完整问卷的得分均高于0.7。向参与者提供的信息严重不足,38.8%的人不知道自己的诊断,超过一半的人对自己疾病的程度不知情。矛盾的是,86.5%的患者对他们收到的信息量表示满意,89.5%的人认为所提供的信息是有帮助的。进一步分析表明,性别、婚姻状况、癌症部位和分期与所接收的信息量之间没有显著关联。然而,年龄和教育程度与信息披露相关,例如年轻且受教育程度高的患者收到的信息更多。尽管获得的信息较少,但老年患者对他们收到的信息也最满意。
尽管很大一部分患者没有得到关于其诊断的适当信息,但绝大多数患者对他们收到的信息量感到满意,并认为这些信息是有用的,这反映了中东文化对癌症患者观念影响的复杂性。