Focusing on Patient Needs and Preferences May Improve Genetic Counseling for Colorectal Cancer
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ORIGINAL RESEARCH
Focusing on Patient Needs and Preferences May Improve Genetic Counseling for Colorectal Cancer Simone Salemink & Nicky Dekker & Carolien M. Kets & Erica van der Looij & Wendy A. G. van Zelst-Stams & Nicoline Hoogerbrugge
Received: 30 September 2011 / Accepted: 14 June 2012 / Published online: 23 August 2012 # The Author(s) 2012. This article is published with open access at Springerlink.com
Abstract 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 QUOTEGENEca 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 S. Salemink : N. Dekker : C. M. Kets : E. van der Looij : W. A. G. van Zelst-Stams : N. Hoogerbrugge (*) Department of Human Genetics 836, Radboud University Nijmegen Medical Centre, P.O. Box 9101, 6500 HB, Nijmegen, The Netherlands e-mail: [email protected] N. Dekker Scientific Institute for Quality of Healthcare, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands N. Hoogerbrugge Department of Medical Oncology, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands
focusing on familial CRC risk and surveillance options, in combination with sensitive communication may lead to better satisfaction with genetic counseling. Keywords Genetic counseling . Patient preferences . Colorectal neoplasms
Introduction The lifetime risk of developing colorectal cancer (CRC) in Western society is approximately 5–6 % (Jemal et al. 2009; The Netherlands Cancer Registry). The majority of these patients have sporadic CRC, while familial and hereditary cancers account for approximately 15 % to 20 % of all CRCs (de Jong and Vasen 2006; Grover et al. 2004; Lynch and de la Chapelle 2003). In these families, healthy relatives of CRC patients have an increased risk of developing CRC themselves, which may be prevented by surveillance colonoscopies (Dove-Edwin et al. 2005; Jarvinen et al. 2000). Familial CRC risk is generally divided into three groups, based on cumulative lifetime risks of developing CRC (
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