title: Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study.
abstract: 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.
authors.affiliation: Clinical Research Centre, Hvidovre University Hospital, Copenhagen University, Copenhagen, Denmark. helle.vendel.petersen@hvh.regionh.dk
authors.forename: Helle Vendel
authors.initials: HV
authors.lastname: Petersen
authors.forename: Mary Jane
authors.initials: MJ
authors.lastname: Esplen
authors.forename: Steen
authors.initials: S
authors.lastname: Ladelund
authors.forename: Inge
authors.initials: I
authors.lastname: Bernstein
authors.forename: Lone
authors.initials: L
authors.lastname: Sunde
authors.forename: Christina
authors.initials: C
authors.lastname: Carlsson
authors.forename: Mef
authors.initials: M
authors.lastname: Nilbert
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D015331:Cohort Studies; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000235:genetics / Q000523:psychology*; D003718:Denmark; D005190:Family; D005260:Female; D005817:Genetic Counseling / Q000523:psychology*; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing; D006801:Humans; D008297:Male; D008875:Middle Aged; D012649:Self Concept; D055815:Young Adult