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

journal contribution
posted on 2013-09-01, 00:00 authored by A Farrelly, Vicki WhiteVicki White, B Meiser, M Jefford, M-A Young, S Ieropoli, I Winship, J Duffy
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.

History

Journal

Familial Cancer

Volume

12

Pagination

509-518

Location

Amsterdam, The Netherlands

ISSN

1389-9600

eISSN

1573-7292

Language

eng

Publication classification

C Journal article, C1.1 Refereed article in a scholarly journal

Copyright notice

2012, Springer Science+Business Media Dordrecht

Issue

3

Publisher

Springer