title: Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: a 5-year follow-up study.
abstract: OBJECTIVE
  To explore long-term psychosocial consequences of carrying a BRCA1/2 mutation and to identify possible risk factors for long-term psychological distress.
  
  
  METHODS
  Five years after genetic test disclosure, 65 female participants (23 carriers, 42 noncarriers) of our psychological follow-up study completed a questionnaire and 51 participants were interviewed. We assessed general and hereditary cancer-related distress, risk perception, openness to discuss the test result with relatives, body image and sexual functioning.
  
  
  RESULTS
  Carriers did not differ from noncarriers on several distress measures and both groups showed a significant increase in anxiety and depression from 1 to 5 years follow-up. Carriers having undergone prophylactic surgery (21 of 23 carriers) had a less favorable body image than noncarriers and 70% reported changes in the sexual relationship. A major psychological benefit of prophylactic surgery was a reduction in the fear of developing cancer. Predictors of long-term distress were hereditary cancer-related distress at blood sampling, having young children, and having lost a relative to breast/ovarian cancer. Long-term distress was also associated with less open communication about the test result within the family, changes in relationships with relatives, doubting about the validity of the test result, and higher risk perception.
  
  
  CONCLUSIONS
  Our findings support the emerging consensus that genetic predisposition testing for BRCA1/2 does not pose major mental health risks, but our findings also show that the impact of prophylactic surgery on aspects such as body image and sexuality should not be underestimated, and that some women are at risk for high distress, and as a result, need more attentive care.
authors.affiliation: Department of Clinical Genetics, Erasmus MC, Rotterdam, the Netherlands. i.vanoostrom@erasmusmc.nl
authors.forename: Iris
authors.initials: I
authors.lastname: van Oostrom
authors.forename: Hanne
authors.initials: H
authors.lastname: Meijers-Heijboer
authors.forename: Litanja N
authors.initials: LN
authors.lastname: Lodder
authors.forename: Hugo J
authors.initials: HJ
authors.lastname: Duivenvoorden
authors.forename: Arthur R
authors.initials: AR
authors.lastname: van Gool
authors.forename: Caroline
authors.initials: C
authors.lastname: Seynaeve
authors.forename: Conny A
authors.initials: CA
authors.lastname: van der Meer
authors.forename: Jan G M
authors.initials: JG
authors.lastname: Klijn
authors.forename: Bert N
authors.initials: BN
authors.lastname: van Geel
authors.forename: Curt W
authors.initials: CW
authors.lastname: Burger
authors.forename: Juriy W
authors.initials: JW
authors.lastname: Wladimiroff
authors.forename: Aad
authors.initials: A
authors.lastname: Tibben
mesh_terms: D000328:Adult; D001007:Anxiety; D001828:Body Image; D003863:Depression; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006580:Genetic Carrier Screening; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing / Q000523:psychology; D006801:Humans; D008408:Mastectomy / Q000523:psychology*; D008875:Middle Aged; D009154:Mutation; D012307:Risk Factors; D012725:Sexual Behavior; D013997:Time Factors