Baars J E, van Dulmen A M, Velthuizen M E, van Riel E, Ausems M G E M
Department of Genetics, Division of Biomedical Genetics, University Medical Center Utrecht, PO Box 85090, 3508 AB, Utrecht, the Netherlands.
NIVEL (Netherlands institute for health services research), Utrecht, the Netherlands.
J Community Genet. 2017 Apr;8(2):97-108. doi: 10.1007/s12687-016-0290-4. Epub 2017 Jan 12.
Lower participation rates in cancer genetic counseling are observed among different ethnic minorities. The goal of our study is to gain insight into determinants of Turkish and Moroccan patients' participation in breast cancer genetic counseling and DNA testing, from the point of view of healthcare professionals and patients. Questionnaire-based telephone interviews about awareness, perceptions, and reasons for (non-) participation in cancer genetic counseling were conducted with 78 Dutch breast cancer patients from Turkish and Moroccan descent. The interviews were held in Arabic, Berber, Turkish, or Dutch by bilingual research assistants. Additionally, 14 breast cancer patients participated in one of two focus group meetings, and two focus groups were held with 11 healthcare professionals. SPSS and QSR Nvivo were used to examine the quantitative and qualitative data, respectively. Half of the total group of patients (N = 78) and 79% of patients eligible for genetic counseling and testing (N = 33) were aware of the possibility of genetic counseling. The most important determinants for nonparticipation in genetic counseling were experienced difficulties in patient-doctor communication, cultural factors (e.g., social norms), limited health literacy, limited knowledge of the family cancer history, and anxiety about cancer. Religious beliefs and knowing personal and family members' breast cancer risks were motives to obtain genetic counseling. Despite the fact that our study showed that Moroccan and Turkish women reported several personal motives to obtain genetic counseling and testing (GCT), patients and healthcare professionals experience significant language and health literacy difficulties, which make it harder to fully access health care such as genetic counseling and testing.
在不同少数民族中，癌症遗传咨询的参与率较低。我们研究的目的是从医疗保健专业人员和患者的角度，深入了解土耳其和摩洛哥患者参与乳腺癌遗传咨询和DNA检测的决定因素。我们对78名土耳其和摩洛哥裔的荷兰乳腺癌患者进行了基于问卷的电话访谈，内容涉及对癌症遗传咨询的知晓度、看法以及（不）参与的原因。访谈由双语研究助理用阿拉伯语、柏柏尔语、土耳其语或荷兰语进行。此外，14名乳腺癌患者参加了两个焦点小组会议中的一个，还与11名医疗保健专业人员进行了两个焦点小组讨论。分别使用SPSS和QSR Nvivo来分析定量和定性数据。在全部患者组（N = 78）中，有一半的患者以及符合遗传咨询和检测条件的患者中的79%（N = 33）知晓遗传咨询的可能性。不参与遗传咨询的最重要决定因素包括医患沟通困难、文化因素（如社会规范）、健康素养有限、对家族癌症病史了解有限以及对癌症的焦虑。宗教信仰以及知晓个人和家庭成员的乳腺癌风险是获取遗传咨询的动机。尽管我们的研究表明，摩洛哥和土耳其女性报告了几个获取遗传咨询和检测（GCT）的个人动机，但患者和医疗保健专业人员在语言和健康素养方面存在重大困难，这使得他们更难充分获得诸如遗传咨询和检测等医疗保健服务。
