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Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study

Petersen, Helle Vendel; Esplen, Mary Jane; Ladelund, Steen; Bernstein, Inge; Sunde, Lone; Carlsson, Christina LU and Nilbert, Mef LU (2011) In Familial Cancer 10(4). p.633-639
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,... (More)
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. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Anxiety, Hereditary cancer, Hereditary nonpolyposis colorectal cancer, Psychosocial, Vulnerability
in
Familial Cancer
volume
10
issue
4
pages
633 - 639
publisher
Kluwer
external identifiers
  • wos:000301507900002
  • scopus:84855654339
ISSN
1389-9600
DOI
10.1007/s10689-011-9459-5
language
English
LU publication?
yes
id
dfdcd75e-de3c-428f-9034-39ccf6adf9d2 (old id 2493626)
date added to LUP
2012-05-08 08:37:11
date last changed
2017-05-28 03:26:54
@article{dfdcd75e-de3c-428f-9034-39ccf6adf9d2,
  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.},
  author       = {Petersen, Helle Vendel and Esplen, Mary Jane and Ladelund, Steen and Bernstein, Inge and Sunde, Lone and Carlsson, Christina and Nilbert, Mef},
  issn         = {1389-9600},
  keyword      = {Anxiety,Hereditary cancer,Hereditary nonpolyposis colorectal cancer,Psychosocial,Vulnerability},
  language     = {eng},
  number       = {4},
  pages        = {633--639},
  publisher    = {Kluwer},
  series       = {Familial Cancer},
  title        = {Limited impact on self-concept in individuals with Lynch syndrome; results from a national cohort study},
  url          = {http://dx.doi.org/10.1007/s10689-011-9459-5},
  volume       = {10},
  year         = {2011},
}