Unmet support needs and distress among women with a BRCA1/2 mutation

Abstract

Distress levels among female BRCA1/2 mutation carriers can be similar to levels found among breast cancer patients. While psychological distress has been associated with unmet needs among cancer patients no study has examined this among BRCA1/2 mutation carriers. The objectives of this study were to: (1) describe the unmet support needs of women with a known BRCA1/2 mutation, (2) determine how unmet needs are related to psychological distress, and (3) identify variables that predict level of unmet need and distress. Female BRCA1/2 mutation carriers were identified through Familial Cancer Centers in 3 Australian states. Two-hundred and seventy-nine participants completed surveys assessing need for help on 16 information and support items. The Impact of Events Scale assessed genetic test related distress. Participants reported an average of 5.4 (SD = 4.9) moderate to very high unmet needs. Twenty-one percent had scores indicating moderate distress, and 13 % indicating severe distress. Younger age (t = -3.34; p < 0.01), not having someone to confide in about the gene mutation (t = 2.57; p = 0.01) and shorter time since notification of mutation status (t = -2.49; p = 0.01) were associated with higher unmet need scores in linear regression analyses. Greater number of unmet needs was associated with a greater likelihood of moderate to severe levels of distress (OR = 1.19; p < 0.01) in logistic regression analyses. Identifying appropriate interventions that target unmet needs among younger women and those with no confidante may help to reduce distress. Interventions that provide an opportunity for women to confide in someone, such as Peer support programs, may be one way of meeting the emotional needs of this population.

Peer support and additional information in group medical consultations (GMCs) forBRCA1/2mutation carriers: A randomized controlled trial

“…Majority of participants received answers to all their questions. The importance of social support, from relatives, friends, peers and health professionals in relation to lower levels of distress, coping with the DNA test results and fewer unmet needs have been shown [3,[5][6][7]. Needs for social support are being addressed by GMCs and were positively evaluated by carriers as well.…”

“…Although mean distress levels of all BRCA mutation carriers are not increased one year after genetic testing [3], around 25-34% of the carriers still experience moderately to severely increased levels of distress [5,6]. Predictors of long-term increased levels of distress are using passive and palliative coping styles, performing excessive breast self-examination, having lost a first-degree relative to breast cancer, overestimating one's breast cancer risk, or having high unmet needs [5][6][7].…”

“…Predictors of long-term increased levels of distress are using passive and palliative coping styles, performing excessive breast self-examination, having lost a first-degree relative to breast cancer, overestimating one's breast cancer risk, or having high unmet needs [5][6][7].…”

How to facilitate psychosocial adjustment in women tested for hereditary breast or ovarian cancer susceptibility? Insights from network analysis

“…In that context, women undergoing genetic testing for HBOC susceptibility experience a stressful situation due to the perceived threat to themselves and their families. A wide range of specific psychosocial difficulties is elicited in relation to the personal or familial cancer vulnerability, management of the hereditary predisposition or communication about cancer risk within the family . These difficulties may solicit various coping strategies …”

“…Coping strategies such as avoidance, distraction or helplessness, self‐controlling (eg, excessive breast self‐examination) or reliance on others have been shown to predict increased worry and psychological distress. Women at high genetic risk of BC do not evidence severe, enduring distress following genetic testing, but they may need further help to minimize their psychosocial difficulties . Psychosocial difficulties may be inter‐related to coping strategies in possible feed‐back loops.…”