Familial adenomatous polyposis: mental health, psychosocial functioning and reactions to genetic risk in adolescents

• Published in: Clinical genetics Vol. 79; no. 1; pp. 35 - 43
• Main Authors: Gjone, H, Diseth, TH, Fausa, O, Nøvik, TS, Heiberg, A
• Format: Journal Article
• Language: English
• Published: Oxford, UK Blackwell Publishing Ltd 01.01.2011; Wiley-Blackwell
• Subjects: Adenomatous Polyposis Coli - diagnosis; Adenomatous Polyposis Coli - epidemiology; Adenomatous Polyposis Coli - genetics; Adenomatous Polyposis Coli - psychology; adolescence; Adolescent; Biological and medical sciences; Cancer; Child; Children & youth; familial adenomatous polyposis; Family - psychology; Female; Fundamental and applied biological sciences. Psychology; Gastroenterology. Liver. Pancreas. Abdomen; General aspects. Genetic counseling; Genes, APC; Genetic disorders; genetic risk; Genetic Testing - psychology; Genetics of eukaryotes. Biological and molecular evolution; Humans; Indexing in process; Interviews as Topic; Male; Medical genetics; Medical sciences; Mental Health; Molecular and cellular biology; Population genetics; psychosocial functioning; Reproduction; Risk Factors; Social Behavior; Stomach. Duodenum. Small intestine. Colon. Rectum. Anus; Tumors; Young Adult; Human; psychosocial functioning; Mental health; Familial adenomatous polyposis coli; Genetic disease; Genetic counseling; Adolescent; genetic risk; adolescence; Digestive diseases; Intestinal disease; Genetics; familial adenomatous polyposis
• ISSN: 0009-9163; 1399-0004
• DOI: 10.1111/j.1399-0004.2010.01534.x

Gjone H, Diseth TH, Fausa O, Nøvik TS, Heiberg A. Familial adenomatous polyposis: mental health, psychosocial functioning and reactions to genetic risk in adolescents. Familial adenomatous polyposis (FAP) in a parent requires diagnostic follow‐up and treatment from adolescence in possible gene carriers in order to prevent cancer development. A nationwide sample (n = 22) of adolescent FAP offspring including 85% of eligible individuals aged 11–20 years and their parents were interviewed with regard to adolescent mental health, psychosocial functioning, knowledge about FAP and genetic risk, and experiences with testing and surgery. Thirty‐six percent of the FAP offspring fulfilled criteria for a psychiatric diagnosis. For adolescents older than 15 years, this was increased relative to a comparison group with Hirschprungs disease and a general population sample. Neither genetic testing nor FAP diagnosis in adolescent FAP‐offspring differentiated significantly between those who fulfilled the criteria and those who did not for psychiatric diagnosis, while a global score of chronic family difficulties did. This may imply that experiencing parental illness more than inheriting FAP is a perceived stressor for adolescent FAP offspring.