title: Can we test for hereditary cancer at 18 years when we start surveillance at 25? Patient reported outcomes.
abstract: DNA-testing for BRCA1/2 or Lynch syndrome is possible from the age of 18 years, although surveillance usually starts at 25. Some patients regret their decision of testing before age 25. This retrospective study evaluates whether the testing age should be above 25 years to prevent adverse effects such as regret or decisional conflict, by determining the percentage and characteristics of patients reporting these problems. 111 of 219 patients (51%) tested for BRCA1/2 mutations or Lynch syndrome between 18 and 25 years from July 1996 to February 2011, returned self-report surveys. Primary measures were regret, decisional conflict and family influence. Secondary measures included quality of life (QoL), coping style, impact of genetic testing, and risk perception. Median age was 27 [21-40] years, with 86% female. 73% was tested for BRCA1/2, 27% for Lynch syndrome. Only 3% reported regret, however 39% had moderate (32%) to severe (7%) decisional conflict. Regression analysis revealed that decisional conflict was associated with more monitoring/neutral coping style (p < 0.03) or paternal/no family mutation (p < 0.02); there were no differences in QoL, impact or risk perception. 42% were mutation carriers, showing equal decisional conflict to non-carriers. 68% would recommend testing <25 years; 77% desired surveillance <25 years if a mutation carrier. Almost no patient tested for hereditary cancer between 18 and 25 years regretted this decision. A third reported retrospective decisional conflict, especially those actively seeking information when faced with a threat and/or those with a paternal or unknown inheritance. These patients may benefit from decisional support and personalized information.
authors.affiliation: Department of Human Genetics, Radboud University Nijmegen Medical Centre, PO Box 9101, 6500 HB, Nijmegen, The Netherlands.
authors.forename: Aisha S
authors.initials: AS
authors.lastname: Sie
authors.forename: Judith B
authors.initials: JB
authors.lastname: Prins
authors.forename: Liesbeth
authors.initials: L
authors.lastname: Spruijt
authors.forename: C Marleen
authors.initials: CM
authors.lastname: Kets
authors.forename: Nicoline
authors.initials: N
authors.lastname: Hoogerbrugge
mesh_terms: D000293:Adolescent; D000328:Adult; D045643:DNA Repair Enzymes / Q000235:genetics; D003657:Decision Making; D005260:Female; D005500:Follow-Up Studies; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing / Q000706:statistics & numerical data*; D006579:Heterozygote; D006801:Humans; D008297:Male; D009154:Mutation / Q000235:genetics; D009386:Neoplastic Syndromes, Hereditary / Q000175:diagnosis* / Q000235:genetics / Q000523:psychology; D011379:Prognosis; D011788:Quality of Life; D012189:Retrospective Studies; D015996:Survival Rate; D055815:Young Adult
chemical_list: D045643:DNA Repair Enzymes