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Discrepancies between estimated and perceived risk of cancer among individuals with hereditary nonpolyposis colorectal cancer

Bartuma, Katarina LU ; Nilbert, Mef LU ; Soller, Maria LU ; Silfverberg, Barbro and Carlsson, Christina LU (2007) In Genetic Testing 11(2). p.183-186
Abstract
Communicating cancer risk and recommending adequate control programs is central for genetic counseling. Individuals affected by hereditary nonpolyposis colorectal cancer (HNPCC) are at about 80% life-time risk of colorectal cancer and for female carriers 40-60% risk of endometrial cancer and 10-15% risk of ovarian cancer. The perceived risk among mutation carriers may, however, deviate from the risk communicated and has been demonstrated to influence adherence to control programs. We investigated the perceived cancer risk among HNPCC mutation carriers (n = 47) and correlated the findings to individual characteristics. A perceived risk of colorectal cancer above 60% was reported by 22/45 individuals, and only one out of five mutation... (More)
Communicating cancer risk and recommending adequate control programs is central for genetic counseling. Individuals affected by hereditary nonpolyposis colorectal cancer (HNPCC) are at about 80% life-time risk of colorectal cancer and for female carriers 40-60% risk of endometrial cancer and 10-15% risk of ovarian cancer. The perceived risk among mutation carriers may, however, deviate from the risk communicated and has been demonstrated to influence adherence to control programs. We investigated the perceived cancer risk among HNPCC mutation carriers (n = 47) and correlated the findings to individual characteristics. A perceived risk of colorectal cancer above 60% was reported by 22/45 individuals, and only one out of five mutation carriers reported a perceived risk > 80%. Female mutation carriers, individuals below age 50, and individuals who received their oncogenetic counseling within 1 year prior to the study reported higher, albeit not significantly, perceived risks of colorectal cancer. Higher perceived risks were also reported by individuals who had lost a parent to HNPCC-related cancer at early age, whereas individuals with a personal history of cancer did not report a higher perceived risk. Regarding gynecological cancer, 6/18 females reported a perceived risk of 40-60% for endometrial cancer, whereas the remaining women both underestimated and overestimated their risk, and none of the women referred to the risk of ovarian cancer. We conclude that despite educational efforts and an increasing amount of data on the cancer risk in HNPCC, a minority of the mutation carriers report a perceived risk at the same level as that communicated during oncogenetic counseling. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Genetic Testing
volume
11
issue
2
pages
183 - 186
publisher
Mary Ann Liebert, Inc.
external identifiers
  • wos:000247927500012
  • scopus:34447251217
ISSN
1557-7473
DOI
10.1089/gte.2007.9999
language
English
LU publication?
yes
id
7bed4752-95fc-41b7-82e2-a5114b558105 (old id 645774)
date added to LUP
2007-12-07 13:02:32
date last changed
2017-07-23 03:38:36
@article{7bed4752-95fc-41b7-82e2-a5114b558105,
  abstract     = {Communicating cancer risk and recommending adequate control programs is central for genetic counseling. Individuals affected by hereditary nonpolyposis colorectal cancer (HNPCC) are at about 80% life-time risk of colorectal cancer and for female carriers 40-60% risk of endometrial cancer and 10-15% risk of ovarian cancer. The perceived risk among mutation carriers may, however, deviate from the risk communicated and has been demonstrated to influence adherence to control programs. We investigated the perceived cancer risk among HNPCC mutation carriers (n = 47) and correlated the findings to individual characteristics. A perceived risk of colorectal cancer above 60% was reported by 22/45 individuals, and only one out of five mutation carriers reported a perceived risk > 80%. Female mutation carriers, individuals below age 50, and individuals who received their oncogenetic counseling within 1 year prior to the study reported higher, albeit not significantly, perceived risks of colorectal cancer. Higher perceived risks were also reported by individuals who had lost a parent to HNPCC-related cancer at early age, whereas individuals with a personal history of cancer did not report a higher perceived risk. Regarding gynecological cancer, 6/18 females reported a perceived risk of 40-60% for endometrial cancer, whereas the remaining women both underestimated and overestimated their risk, and none of the women referred to the risk of ovarian cancer. We conclude that despite educational efforts and an increasing amount of data on the cancer risk in HNPCC, a minority of the mutation carriers report a perceived risk at the same level as that communicated during oncogenetic counseling.},
  author       = {Bartuma, Katarina and Nilbert, Mef and Soller, Maria and Silfverberg, Barbro and Carlsson, Christina},
  issn         = {1557-7473},
  language     = {eng},
  number       = {2},
  pages        = {183--186},
  publisher    = {Mary Ann Liebert, Inc.},
  series       = {Genetic Testing},
  title        = {Discrepancies between estimated and perceived risk of cancer among individuals with hereditary nonpolyposis colorectal cancer},
  url          = {http://dx.doi.org/10.1089/gte.2007.9999},
  volume       = {11},
  year         = {2007},
}