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Regular surveillance for Li-fraumeni syndrome: advice, adherence and perceived benefits

Content Provider	Springer Nature Link
Author	Lammens, C. R. M. Bleiker, E. M. A. Aaronson, N. K. Wagner, A. Sijmons, R. H. Ausems, M. G. E. M. Vriends, A. H. J. T. Ruijs, M. W. G. Os, T. A. M. Spruijt, L. Gómez García, E. B. Cats, A. Nagtegaal, T. Verhoef, S.
Copyright Year	2010
Abstract	Li Fraumeni Syndrome (LFS) is a hereditary cancer syndrome characterized by a high risk of developing various types of cancer from birth through late adulthood. Clinical benefits of surveillance for LFS are limited. The aim of this study is to investigate which advice for regular surveillance, if any, is given to high risk LFS individuals, adherence to that advice, and any psychological gain or burden derived from surveillance. Fifty-five high risk individuals (proven carriers and those at 50% risk) from families with a p53 germline mutation were invited to participate, of whom 82% completed a self-report questionnaire assessing advice for regular surveillance, compliance, perceived benefits and barriers of screening and LFS-related distress (IES) and worries (CWS). In total, 71% of the high risk family members received advice to undergo regular surveillance for LFS. The majority (78%) reported adherence with the recommended advice. All high risk women aged 25 or older reported having been advised to undergo annual breast cancer surveillance (n = 11), of whom 64% (n = 7) in specific received advice to undergo a mammography. Seventy-eight percent of respondents indicated having received tailored surveillance advice based on family cancer history. The large majority of respondents believed in the value of surveillance to detect tumors at an early stage (90%) and reported that it gave them a sense of control (84%) and security (70%). Despite its limited clinical benefits, the majority of high risk LFS family are advised to undergo, and are adherent to, and report psychological benefit from, regular surveillance programs.
Starting Page	647
Ending Page	654
Page Count	8
File Format	PDF
ISSN	13899600
Journal	Familial Cancer
Volume Number	9
Issue Number	4
e-ISSN	15737292
Language	English
Publisher	Springer Netherlands
Publisher Date	2010-07-25
Publisher Place	Dordrecht
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Li-Fraumeni syndrome (LFS) Surveillance Compliance Psychological barriers and benefits Biomedicine general Epidemiology Human Genetics Cancer Research
Content Type	Text
Resource Type	Article
Subject	Genetics Cancer Research Genetics (clinical) Oncology

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Regular surveillance for Li-fraumeni syndrome: advice, adherence and perceived benefits

Regular surveillance for Li-fraumeni syndrome: advice, adherence and perceived benefits

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Regular surveillance for Li-fraumeni syndrome: advice, adherence and perceived benefits