High demoralization in a minority of oophorectomized BRCA1/2 mutation carriers influences quality of life

Abstract

Introduction: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords:

• Anxiety
• BRCA mutation
• demoralization
• quality of life
• risk-reducing salpingo-oophorectomy

Disclosure statement

N. Hoogerbrugge acts as consultant for Astra Zeneca since June 2014. None of the other authors have conflicts of interest to declare.

Current knowledge on the subject

• Hopelessness is the hallmark of demoralization.

• Demoralization influences well-being in cancer patients.

• Being a female BRCA1/2 mutation carrier has physical and psychological impact.

What this study adds

• Demoralization is generally low in oophorectomized BRCA1/2 mutation carriers.

• One out of six BRCA1/2 mutation carriers are moderately to highly demoralized.

• Being demoralized has a negative impact on well-being in BRCA1/2 mutation carriers.