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Familial Cancer
Published in: Familial Cancer 2/2013

01-06-2013 | Original Article

100 years lynch syndrome: what have we learned about psychosocial issues?

Authors: Eveline M. A. Bleiker, Mary Jane Esplen, Bettina Meiser, Helle Vendel Petersen, Andrea Farkas Patenaude

Published in: Familial Cancer | Issue 2/2013

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Abstract

In the care of patients with Lynch Syndrome (LS), a range of psychosocial issues are encountered, which significantly affect patient outcomes. A brief historical background of ‘psycho-onco-genetics’ (the domain where psychology, oncology and genetics meet) in relation to LS is presented, followed by an overview of important psychosocial issues identified in the past 20 years. The identification of mismatch repair genes in 1993–1994 made possible genetic counseling and testing for patients who had cancer and for potentially high-risk relatives without cancer. At that time, concerns were raised about the potentially negative psychosocial impact of predictive genetic testing. Since 1993, a large number of studies have been conducted to investigate the possible psychosocial benefits and limitations of such testing. This article presents an overview of: the uptake of and motivations for genetic testing, its psychosocial impact (e.g. psychological adaptation, impact on risk perception and self-concept, and concerns about, and experiences of, genetic discrimination), psychological screening instruments, adherence to and decision-making about preventive strategies, family communication, lifestyle changes, reproductive technology utilization, and professional psychosocial support needs of members of families with LS. Finally, challenges for the future are discussed, including population screening and genomic testing.
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Metadata
Title
100 years lynch syndrome: what have we learned about psychosocial issues?
Authors
Eveline M. A. Bleiker
Mary Jane Esplen
Bettina Meiser
Helle Vendel Petersen
Andrea Farkas Patenaude
Publication date
01-06-2013
Publisher
Springer Netherlands
Published in
Familial Cancer / Issue 2/2013
Print ISSN: 1389-9600
Electronic ISSN: 1573-7292
DOI
https://doi.org/10.1007/s10689-013-9653-8

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Endometrial and ovarian cancer in women with Lynch syndrome: update in screening and prevention

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The mechanism of mismatch repair and the functional analysis of mismatch repair defects in Lynch syndrome

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Lynch syndrome-associated neoplasms: a discussion on histopathology and immunohistochemistry
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