title: Long-term psychosocial and behavioral adjustment in individuals receiving genetic test results in Lynch syndrome.
abstract: A cross-sectional study of 155 participants who underwent genetic testing for Lynch syndrome (LS) examined long-term psychosocial and behavioral outcomes. Participants completed standardized measures of perceived risk, psychosocial functioning, knowledge, and a questionnaire of screening activities. Participants were on average 47.3 years and had undergone testing a mean of 5.5 years prior. Eighty four (54%) tested positive for a LS mutation and 71 (46%) negative. For unaffected carriers, perceived lifetime risk of colorectal cancer was 68%, and surprisingly, 40% among those testing negative. Most individuals demonstrated normative levels of psychosocial functioning. However, 25% of those testing negative had moderate depressive symptoms, as measured by the Center for Epidemiologic Studies for Depression Scale, and 31% elevated state anxiety on the State-Trait Anxiety Inventory. Being female and a stronger escape - avoidant coping style were predictive of depressive symptoms. For state anxiety, similar patterns were observed. Quality of life and social support were significantly associated with lower anxiety. Carriers maintained higher knowledge compared to those testing negative, and were more engaged in screening. In summary, most individuals adapt to genetic test results over the long term and continue to engage in screening. A subgroup, including some non-carriers, may require added psychosocial support.
authors.affiliation: University Health Network, Toronto, Canada; Department of Psychiatry, Faculty of Medicine, University of Toronto, Toronto, Canada; de Souza Institute, Toronto, Canada.
authors.forename: M J
authors.initials: MJ
authors.lastname: Esplen
authors.forename: J
authors.initials: J
authors.lastname: Wong
authors.forename: M
authors.initials: M
authors.lastname: Aronson
authors.forename: K
authors.initials: K
authors.lastname: Butler
authors.forename: H
authors.initials: H
authors.lastname: Rothenmund
authors.forename: K
authors.initials: K
authors.lastname: Semotiuk
authors.forename: L
authors.initials: L
authors.lastname: Madlensky
authors.forename: C
authors.initials: C
authors.lastname: Way
authors.forename: E
authors.initials: E
authors.lastname: Dicks
authors.forename: J
authors.initials: J
authors.lastname: Green
authors.forename: S
authors.initials: S
authors.lastname: Gallinger
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001007:Anxiety; D002170:Canada / Q000453:epidemiology; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis* / Q000453:epidemiology / Q000235:genetics / Q000523:psychology*; D003430:Cross-Sectional Studies; D003863:Depression; D005260:Female; D005500:Follow-Up Studies; D005817:Genetic Counseling; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006579:Heterozygote; D006801:Humans; D008297:Male; D008875:Middle Aged; D017063:Outcome Assessment, Health Care; D011788:Quality of Life; D012042:Registries; D012307:Risk Factors; D012944:Social Support; D013315:Stress, Psychological; D011795:Surveys and Questionnaires
keywords: Lynch syndrome; colorectal cancer; empirical study; genetic testing; long-term follow-up; psychological adjustment; screening and knowledge