caa a22 4500 445330600 CHVBK 20180317142736.0 cr unu---uuuuu 170323e20110301xx s 000 0 eng 10.1007/s10689-010-9386-x doi (NATIONALLICENCE)springer-10.1007/s10689-010-9386-x Sharing genetic risk with next generation: mutation-positive parents' communication with their offspring in Lynch Syndrome [Elektronische Daten] [Katja Aktan-Collan, Helena Kääriäinen, Eeva Kolttola, Kirsi Pylvänäinen, Heikki Järvinen, Ari Haukkala, Jukka-Pekka Mecklin] Identification of hereditary predisposition to cancer has limited significance if not followed by efficient cancer prevention. The responsibility of informing offspring about genetic risk often falls to the parents. We systematically investigated how parents with Lynch Syndrome share knowledge of genetic risk with their offspring, challenges in the communication process and wish for professional support. Of all known mutation carriers over age 40 (n=337) in 102 Finnish Lynch Syndrome families, 86% completed a self-reported questionnaire; 248 of them (86%) had children. Of the 248 parents, 87% reported disclosure and 13% nondisclosure. Reasons for nondisclosure were mainly the young age of offspring, socially distant relationships, or feeling of difficulty in discussing the topic. Men reported significantly more often disclosure with a support person (spouse etc.) (P<0.001). The most difficult communication aspect was discussing children's cancer risk. Of the 191 firstborn adult children informed, 69% had taken the predictive genetic test. Every third parent suggested that health professionals should be involved in passing on the information and that a family appointment at the genetic clinic should be organized at the time of disclosure. Nearly all parents had informed their adult offspring about the genetic risk and possibility of genetic testing, but almost one-third were unsure of how their offspring had used the information. The challenge is to improve the communication processes, so that all offspring would get the information important for their health care, and parents would get the professional support desired at disclosure. Springer Science+Business Media B.V., 2010 Communication nationallicence Genetic risk information nationallicence Hereditary non-polyposis colorectal cancer nationallicence HNPCC nationallicence Lynch Syndrome nationallicence LS : Lynch Syndrome nationallicence HNPCC : Hereditary non-polyposis colorectal cancer nationallicence Aktan-Collan Katja Department of Medical Genetics, Haartman Institute Biomedicum, University of Helsinki, P.O. Box 63, 00014, Helsinki, Finland aut Kääriäinen Helena National Institute for Health and Welfare, Helsinki, Finland aut Kolttola Eeva Department of Social Psychology, Faculty of Social Sciences, University of Helsinki, Helsinki, Finland aut Pylvänäinen Kirsi Department of Surgery, Jyväskylä Central Hospital, Jyväskylä, Finland aut Järvinen Heikki Department of Surgery, Division of Gastroenterology, University Hospital of Helsinki, Helsinki, Finland aut Haukkala Ari Department of Social Psychology, Faculty of Social Sciences, University of Helsinki, Helsinki, Finland aut Mecklin Jukka-Pekka Department of Surgery, Jyväskylä Central Hospital, Jyväskylä, Finland aut Familial Cancer Springer Netherlands 10/1(2011-03-01), 43-50 1389-9600 10:1<43 2011 10 10689 https://doi.org/10.1007/s10689-010-9386-x text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s10689-010-9386-x text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Aktan-Collan Katja Department of Medical Genetics, Haartman Institute Biomedicum, University of Helsinki, P.O. Box 63, 00014, Helsinki, Finland aut NATIONALLICENCE 700 1- Kääriäinen Helena National Institute for Health and Welfare, Helsinki, Finland aut NATIONALLICENCE 700 1- Kolttola Eeva Department of Social Psychology, Faculty of Social Sciences, University of Helsinki, Helsinki, Finland aut NATIONALLICENCE 700 1- Pylvänäinen Kirsi Department of Surgery, Jyväskylä Central Hospital, Jyväskylä, Finland aut NATIONALLICENCE 700 1- Järvinen Heikki Department of Surgery, Division of Gastroenterology, University Hospital of Helsinki, Helsinki, Finland aut NATIONALLICENCE 700 1- Haukkala Ari Department of Social Psychology, Faculty of Social Sciences, University of Helsinki, Helsinki, Finland aut NATIONALLICENCE 700 1- Mecklin Jukka-Pekka Department of Surgery, Jyväskylä Central Hospital, Jyväskylä, Finland aut NATIONALLICENCE 773 0- Familial Cancer Springer Netherlands 10/1(2011-03-01), 43-50 1389-9600 10:1<43 2011 10 10689 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer