title: High demoralization in a minority of oophorectomized BRCA1/2 mutation carriers influences quality of life.
abstract: Demoralization is a relatively neglected issue in which low morale and poor coping result from a stressor such as familial cancer risk. Female BRCA1/2 mutation carriers are highly susceptible for developing breast and ovarian cancer. The aim of this study was to evaluate demoralization in oophorectomized BRCA1/2 mutation carriers and its relation to quality of life.
  
  
  
  This cross-sectional study examined 288 oophorectomized BRCA1/2 mutation carriers using the following standardized self-report measures: Demoralization Scale, EORTC Quality of Life Questionnaire-C30, State-Trait Anxiety Inventory and the Cancer Worry Scale.
  
  
  
  The mean score on the Demoralization Scale was 17.8 (SD 14.0). A clinically significant level of demoralization, defined as a score ≥30, was found in 45 BRCA1/2 mutation carriers (16%). Being highly demoralized was associated with a significantly lower quality of life, and higher levels of physical problems, anxiety and cancer worries. No demographic or clinical factors could predict higher levels of demoralization.
  
  
  
  Our findings established that a clear proportion of oophorectomized BRCA1/2 mutation carriers experience demoralization impacting on their well-being. Further research is needed to explore the natural trajectory of demoralization and the resultant need for support in these women.
authors.affiliation: a Department of Obstetrics and Gynaecology , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Marieke
authors.initials: M
authors.lastname: Arts-de Jong
authors.affiliation: b Nijmegen Institute for Scientist-Practitioners in Addiction, Radboud University Nijmegen , Nijmegen , The Netherlands.
authors.forename: Cor A J
authors.identifier: 0000-0003-1824-7303
authors.initials: CAJ
authors.lastname: DeJong
authors.affiliation: c Scientific Institute for Quality of Health Care, Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Rosella P
authors.initials: RP
authors.lastname: Hermens
authors.affiliation: d Department of Psychiatry, School of Clinical Sciences at Monash Health , Monash University , Clayton , Victoria , Australia.
authors.forename: David W
authors.initials: DW
authors.lastname: Kissane
authors.affiliation: a Department of Obstetrics and Gynaecology , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Leon M
authors.initials: LM
authors.lastname: Massuger
authors.affiliation: e Department of Human Genetics , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Nicoline
authors.identifier: 0000-0003-2393-8141
authors.initials: N
authors.lastname: Hoogerbrugge
authors.affiliation: f Department of Medical Psychology , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Judith B
authors.initials: JB
authors.lastname: Prins
authors.affiliation: a Department of Obstetrics and Gynaecology , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Joanne A
authors.initials: JA
authors.lastname: deHullu
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D024682:BRCA2 Protein / Q000235:genetics; D003430:Cross-Sectional Studies; D005260:Female; D006579:Heterozygote; D006801:Humans; D008875:Middle Aged; D009013:Morale; D010051:Ovarian Neoplasms / Q000517:prevention & control*; D010052:Ovariectomy / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D044767:Ubiquitin-Protein Ligases / Q000235:genetics
chemical_list: D024682:BRCA2 Protein; C551750:BRCA2 protein, human; C111164:BRAP protein, human; D044767:Ubiquitin-Protein Ligases
keywords: Anxiety; BRCA mutation; demoralization; quality of life; risk-reducing salpingo-oophorectomy