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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.

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Acknowledgments

This research was funded by The National Breast Cancer Foundation, Grant [PG-08-01]. Bettina Meiser is supported by a Career Development Award Level 2 from the National Health and Medical Research Council of Australia and a Career Development Fellowship from the Cancer Institute New South Wales. The authors would like to thank the study participants, as well as the genetic counsellors at the Familial Cancer Centres at Monash Medical Centre, Peter MacCallum Cancer Centre, Prince of Wales Hospital, Westmead Hospital, the Royal Melbourne Hospital, and South Australia Clinical Genetics Service. The authors would also like to acknowledge the work of Ms Jane Hayman on this research project. No funding source had any role in the design; collection, analysis and interpretation of data for this study; or in the writing of the report and decision to submit the paper for publication.

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The authors declare that they have no conflict of interest.

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Correspondence to Ashley Farrelly.

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Farrelly, A., White, V., Meiser, B. et al. Unmet support needs and distress among women with a BRCA1/2 mutation. Familial Cancer 12, 509–518 (2013). https://doi.org/10.1007/s10689-012-9596-5

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Keywords

  • BRCA1/2
  • Psychological distress
  • Unmet needs
  • Breast/ovarian cancer
  • Impact of Events Scale