title: 100 years Lynch syndrome: what have we learned about psychosocial issues?
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.
authors.affiliation: Division of Psychosocial Research and Epidemiology and Family Cancer Clinic, The Netherlands Cancer Institute, Plesmanlaan 121, Amsterdam, The Netherlands. e.bleiker@nki.nl
authors.forename: Eveline M A
authors.initials: EM
authors.lastname: Bleiker
authors.forename: Mary Jane
authors.initials: MJ
authors.lastname: Esplen
authors.forename: Bettina
authors.initials: B
authors.lastname: Meiser
authors.forename: Helle Vendel
authors.initials: HV
authors.lastname: Petersen
authors.forename: Andrea Farkas
authors.initials: AF
authors.lastname: Patenaude
mesh_terms: D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000266:history* / Q000523:psychology; D055088:Early Detection of Cancer / Q000523:psychology*; D005817:Genetic Counseling / Q000523:psychology; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing; D049673:History, 20th Century; D049674:History, 21st Century; D006801:Humans; D011584:Psychology