Salemink Simone, Dekker Nicky, Kets Carolien M, van der Looij Erica, van Zelst-Stams Wendy A G, Hoogerbrugge Nicoline
Department of Human Genetics 836, Radboud University Nijmegen Medical Centre, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands.
J Genet Couns. 2013 Feb;22(1):118-24. doi: 10.1007/s10897-012-9519-5. Epub 2012 Aug 23.
During cancer genetic counseling, different items which counselors consider important are discussed. However, relatively little empirical evidence exists regarding the needs and preferences of counselees. In this study needs and preferences were assessed from counselees with a personal and/or family history of colorectal cancer (CRC), who were referred for genetic counseling regarding CRC. They received a slightly modified version of the QUOTE-GENE(ca) questionnaire prior to their first visit to the Hereditary Cancer Clinic. Response rate was 60 % (48/80 participants). Counselees rated the importance of 45 items assessing their needs and preferences regarding the content and process of genetic counseling. Participants rated the items regarding discussion of information about their familial CRC risk (100 %) and preventive options (98 %) as important or very important. Fewer participants rated items concerning general information on genetics as important. Sensitive communication during counseling was considered very important by a large percentage of counselees. Generally, no major differences were seen between participants in relation to individual characteristics. Our data suggest that focusing on familial CRC risk and surveillance options, in combination with sensitive communication may lead to better satisfaction with genetic counseling.
在癌症遗传咨询过程中,会讨论咨询师认为重要的不同事项。然而,关于咨询对象的需求和偏好,实证证据相对较少。在本研究中,对有结直肠癌(CRC)个人和/或家族史、因CRC被转介进行遗传咨询的咨询对象的需求和偏好进行了评估。他们在首次就诊于遗传性癌症诊所之前,收到了一份略作修改的QUOTE-GENE(ca)问卷。回复率为60%(48/80名参与者)。咨询对象对评估他们在遗传咨询内容和过程方面的需求和偏好的45个项目的重要性进行了评分。参与者将关于讨论其家族性CRC风险信息(100%)和预防方案(98%)的项目评为重要或非常重要。较少参与者将关于遗传学一般信息的项目评为重要。很大比例的咨询对象认为咨询过程中的敏感沟通非常重要。总体而言,参与者在个体特征方面没有明显差异。我们的数据表明,关注家族性CRC风险和监测方案,结合敏感沟通,可能会提高对遗传咨询的满意度。