NDLI: Psychosocial consequences of predictive genetic testing for lynch syndrome and associations to surveillance behaviour in a 7-year follow-up study

Content Provider	Springer Nature Link
Author	Aktan Collan, Katja Kääriäinen, Helena Järvinen, Heikki Peltomäki, Päivi Pylvänäinen, Kirsi Mecklin, Jukka Pekka Haukkala, Ari
Copyright Year	2013
Abstract	We evaluated long-term psychosocial consequences of predictive genetic testing, and surveillance behaviour in Lynch syndrome (LS). We conducted a longitudinal study of 208 participants (62 LS mutation carriers and 146 non-carriers) who provided information on general anxiety (State-Trait Anxiety Inventory), fear of cancer and dying, satisfaction with life, risk and test perceptions, and surveillance behaviour in the baseline questionnaire before testing, and 1 month, 1 year and 7 years post-test. At 7 years, most of the psychosocial variables remained unchanged, regardless of mutation status. Carriers tended to underestimate their colorectal cancer risk but were more worried about their cancer risk than their counterparts. Non-carriers reported a higher degree of satisfaction with their testing decisions (P < 0.05), but had more doubts concerning test result validity than carriers (P < 0.05). All carriers attended a post-test colonoscopy surveillance, while 16 % of non-carriers reported colonoscopy examinations. Those non-carriers with doubts about test validity were more likely (P = 0.019) to report post-test colonoscopy. Of the carriers, 17 % had an interval longer than 3 years between their colonoscopies. Fear of dying soon, measured at 1-month post-test follow-up was the only psychosocial variable predicting non-compliance in recommended surveillance. No adverse psychosocial consequences were detected, and respondents were satisfied with their decision to testing 7 years post-test. Among the carriers, solely fear of dying soon predicted non-compliance in recommended surveillance. Some non-carriers were still worried about their risk and had doubts about the validity of their genetic testing results predicting post-test colonoscopy.
Starting Page	639
Ending Page	646
Page Count	8
File Format	PDF
ISSN	13899600
Journal	Familial Cancer
Volume Number	12
Issue Number	4
e-ISSN	15737292
Language	English
Publisher	Springer Netherlands
Publisher Date	2013-03-20
Publisher Place	Dordrecht
Access Restriction	One Nation One Subscription (ONOS)
Subject Keyword	Lynch syndrome Hereditary nonpolyposis colorectal cancer Predictive genetic testing Psychosocial consequences Cancer surveillance Surveillance behaviour Cancer Research Human Genetics Epidemiology Biomedicine general
Content Type	Text
Resource Type	Article
Subject	Genetics Cancer Research Genetics (clinical) Oncology

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1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
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