caa a22 4500 445331143 CHVBK 20180317142737.0 cr unu---uuuuu 170323e20111201xx s 000 0 eng 10.1007/s10689-011-9459-5 doi (NATIONALLICENCE)springer-10.1007/s10689-011-9459-5 Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study [Elektronische Daten] [Helle Petersen, Mary Esplen, Steen Ladelund, Inge Bernstein, Lone Sunde, Christina Carlsson, Mef Nilbert] An increasing number of individuals seek genetic counseling and hereby learn about hereditary cancer in the family. Lynch syndrome is associated with an inherited high risk for colorectal and gynecological cancer, but knowledge about how family members at risk perceive their situation is limited. We used the national Danish HNPCC register to collect data on self-concept from 413 individuals with Lynch syndrome. The recently developed Lynch syndrome self-concept scale contains 20 items within two subscales related to stigma-vulnerability and bowel symptom-related anxiety. Significantly higher total scores, indicating a greater impact on self-concept, were reported by females and by individuals with experience from cancer in close relatives, whereas individuals with less formal education scored significantly higher on the stigma and vulnerability subscale. Scores in the upper quartile were more often reported by women (odds ratio 1.8) and by individuals with less education (OR 1.8). This study provides the first extended use of the Lynch syndrome self-concept scale and suggests that the majority of the Danish mutation carriers adapt well to the situation, though knowledge about the increased risk of cancer seem to have a greater impact in females, individuals with less education and those with experience of cancer in close relatives. Springer Science+Business Media B.V., 2011 Anxiety nationallicence Hereditary cancer nationallicence Hereditary nonpolyposis colorectal cancer nationallicence Psychosocial nationallicence Vulnerability nationallicence Petersen Helle Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark aut Esplen Mary Division of Behavioral Science and Health, Toronto General Research Institute, University Health Network, Toronto, Canada aut Ladelund Steen Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark aut Bernstein Inge HNPCC-register, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark aut Sunde Lone Department of Clinical Genetics, Aalborg University Hospital, Aalborg University, Aalborg, Denmark aut Carlsson Christina Department of Oncology, Institute of Clinical Sciences, Skane University Hospital, Lund University, Lund, Sweden aut Nilbert Mef Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark aut Familial Cancer Springer Netherlands 10/4(2011-12-01), 633-639 1389-9600 10:4<633 2011 10 10689 https://doi.org/10.1007/s10689-011-9459-5 text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s10689-011-9459-5 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Petersen Helle Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark aut NATIONALLICENCE 700 1- Esplen Mary Division of Behavioral Science and Health, Toronto General Research Institute, University Health Network, Toronto, Canada aut NATIONALLICENCE 700 1- Ladelund Steen Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark aut NATIONALLICENCE 700 1- Bernstein Inge HNPCC-register, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark aut NATIONALLICENCE 700 1- Sunde Lone Department of Clinical Genetics, Aalborg University Hospital, Aalborg University, Aalborg, Denmark aut NATIONALLICENCE 700 1- Carlsson Christina Department of Oncology, Institute of Clinical Sciences, Skane University Hospital, Lund University, Lund, Sweden aut NATIONALLICENCE 700 1- Nilbert Mef Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark aut NATIONALLICENCE 773 0- Familial Cancer Springer Netherlands 10/4(2011-12-01), 633-639 1389-9600 10:4<633 2011 10 10689 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer