ArticleFamilial cancer2013
Psychosocial consequences of predictive genetic testing for Lynch syndrome and associations to surveillance behaviour in a 7-year follow-up study.
Article in Familial cancer, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 2 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
21 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The efficacy of genetic counseling for familial colorectal cancer: A meta-analysis.Journal of genetic counseling · 2025Pooled it
- Mapping psychosocial interventions in familial colorectal cancer: a rapid systematic review.BMC cancer · 2022Pooled it
- The efficacy of genetic counselling for familial colorectal cancer. A randomised clinical trial.European journal of human genetics : EJHG · 2026Trial
- Optimizing Reporting and Outreach for Surveillance and Risk-Reducing Surgeries for Cancer Genetic Predisposition: Findings of a Workshop Organized by the International Cascade Consortium.Public health genomics · 2026Article
- Psychological Impact ofCancers · 2022Article
- "Left in limbo": Exploring how patients with colorectal cancer interpret and respond to a suspected Lynch syndrome diagnosis.Hereditary cancer in clinical practice · 2021Article
- Review
- Uptake and predictors of colonoscopy use in family members not participating in cascade genetic testing for Lynch syndrome.Scientific reports · 2020Article
- Experience Gained from the Development and Execution of a Multidisciplinary Multi-syndrome Hereditary Colon Cancer Family Conference.Journal of cancer education : the official journal of the American Association for Cancer Education · 2019Article
- Cancer communication research in the era of genomics and precision medicine: a scoping review.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- MethylatedBMJ open gastroenterology · 2019Article
- "I would like to discuss it further with an expert": a focus group study of Finnish adults' perspectives on genetic secondary findings.Journal of community genetics · 2018Article
- Educational and Psychosocial Support Needs in Lynch Syndrome: Implementation and Assessment of an Educational Workshop and Support Group.Journal of genetic counseling · 2017Article
- How does genetic risk information for Lynch syndrome translate to risk management behaviours?Hereditary cancer in clinical practice · 2017Article
- Physician trust moderates the relationship between intolerance of uncertainty and cancer worry interference among women with Lynch syndrome.Journal of behavioral medicine · 2016Article
- Outcome of genetic evaluation of patients with kidney cancer referred for suspected hereditary cancer syndromes.Urologic oncology · 2016Article
- Genetic testing for Lynch syndrome: family communication and motivation.Familial cancer · 2016Article
- Psychosocial Impact of Lynch Syndrome on Affected Individuals and Families.Digestive diseases and sciences · 2015Review
- Exploring psychological responses to genetic testing for Lynch Syndrome within the family context.Psycho-oncology · 2014Article
- The genetic basis of Lynch syndrome and its implications for clinical practice and risk management.The application of clinical genetics · 2014Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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