Unmet support needs and distress among women with a BRCA1 / 2 mutation
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ORIGINAL ARTICLE
Unmet support needs and distress among women with a BRCA1/2 mutation Ashley Farrelly • Victoria White • Bettina Meiser Michael Jefford • Mary-Anne Young • Sandra Ieropoli • Ingrid Winship • Jessica Duffy
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Published online: 23 December 2012 Ó Springer Science+Business Media Dordrecht 2012
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.
A. Farrelly (&) V. White M. Jefford Centre for Behavioral Research in Cancer, Cancer Council Victoria, 1 Rathdowne Street, Carlton, VIC 3000, Australia e-mail: [email protected]
Keywords BRCA1/2 Psychological distress Unmet needs Breast/ovarian cancer Impact of Events Scale
B. Meiser University of New South Wales, Sydney, NSW, Australia
Introduction
M. Jefford M.-A. Young Peter MacCallum Cancer Centre, Melbourne, VIC, Australia M. Jefford I. Winship University of Melbourne, Melbourne, VIC, Australia S. Ieropoli Early in Life Mental Health Services, Southern Health, Clayton, VIC, Australia I. Winship The Royal Melbourne Hospital, Melbourne, VIC, Australia J. Duffy Prince of Wales Hospital, Sydney, NSW, Australia
Women who carry a mutation in one of the breast/ovarian cancer genes, BRCA1 or BRCA2, face up to a 65 % risk of developing breast cancer and up to a 39 % risk of developing ovarian cancer by the age of 70 [1]. There is evidence that risk-reducing bi
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