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Familial Cancer

, Volume 15, Issue 1, pp 63–73

First Online: 07 October 2015DOI: 10.1007-s10689-015-9842-8

Cite this article as: Leenen, C.H.M., Heijer, M

, van der Meer, C. et al. Familial Cancer 2016 15: 63. doi:10.1007-s10689-015-9842-8

Abstract

Current genetic counselling practice for Lynch syndrome LS relies on diagnosed index patients to inform their biological family about LS, referred to as the family-mediated approach. The objective of this study was to evaluate this approach and to identify factors influencing the uptake of genetic testing for LS. In 59 mutation carriers, 70 non carriers and 16 non-tested relatives socio-demographic characteristics, family communication regarding LS, experiences and attitudes towards the family-mediated approach and motivations for genetic testing, were assessed. The majority of all respondents 73 % were satisfied with the family-mediated approach. Nevertheless, 59 % of the respondents experienced informing a family member and 57 % being informed by a family member as burdensome. Non-tested differed from tested respondents, in that they were younger, less closely related to the index patient and a lower proportion had children. The most important reasons for declining genetic testing were 1 anticipating problems with life insurance and mortgage, 2 being content with life as it is, and 3 not experiencing any physical complaints. In conclusion, the majority of respondents consider the current family-mediated information procedure acceptable, although the provision of information on LS by relatives may be burdensome. Special attention should be paid to communication of LS to more distant relatives.

KeywordsLynch syndrome Genetic testing Family communication Motivation  Download fulltext PDF



Autor: Celine H. M. Leenen - Mariska den Heijer - Conny van der Meer - Ernst J. Kuipers - Monique E. van Leerdam - Anja Wagn

Fuente: https://link.springer.com/







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