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

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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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Acknowledgments

We thank Dr. Matthijs Bleiker for his helpful suggestions to improve the content of this paper, Suzanne Bakker and Julia Kornetski for gathering materials needed for the preparation of this manuscript, and Miranda Gerritsma for her help with the references. Bettina Meiser is supported by a Career Development Award from the National Health and Medical Research Council (NHMRC) of Australia.

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Authors and Affiliations

  1. Division of Psychosocial Research and Epidemiology and Family Cancer Clinic, The Netherlands Cancer Institute, Plesmanlaan 121, 1066 CX, Amsterdam, The Netherlands

    Eveline M. A. Bleiker

  2. University Health Network, Faculty of Medicine, University of Toronto, 200 Elizabeth Street, EN 9-242A, Toronto, ON, M5G 2C4, Canada

    Mary Jane Esplen

  3. Prince of Wales Clinical School, University of New South Wales, Sydney, NSW, 2052, Australia

    Bettina Meiser

  4. Clinical Research Center, HNPCC Register, Copenhagen University Hospital, Hvidovre, Kettegaard Allé 30, 2650, Hvidovre, Denmark

    Helle Vendel Petersen

  5. Dana-Farber Cancer Institute, Harvard Medical School, 450 Brookline Avenue, Boston, MA, 02215, USA

    Andrea Farkas Patenaude

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  1. Eveline M. A. Bleiker
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Correspondence to Eveline M. A. Bleiker.

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Bleiker, E.M.A., Esplen, M.J., Meiser, B. et al. 100 years lynch syndrome: what have we learned about psychosocial issues?. Familial Cancer 12, 325–339 (2013). https://doi.org/10.1007/s10689-013-9653-8

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