Systematic review of the empirical investigation of resources to support decision-making regarding BRCA1 and BRCA2 genetic testing in women with breast cancer |
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Authors: | Chloe Grimmett Karen Pickett Jonathan Shepherd Karen Welch Alejandra Recio-Saucedo Elke Streit Helen Seers Anne Armstrong Ramsey I. Cutress D. Gareth Evans Ellen Copson Bettina Meiser Diana Eccles Claire Foster |
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Affiliation: | 1. Faculty of Health Sciences, University of Southampton, Southampton, UK;2. Southampton Health Technology Assessments Centre, University of Southampton, Southampton, UK;3. National Institute for Health Research (NIHR) Collaboration for Applied Health Research and Care (CLAHRC) Wessex, University of Southampton, Southampton, UK;4. Christie Hospital NHS Foundation Trust and Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK;5. University of Southampton and University Hospital Southampton, Somers Cancer Research Building, Southampton, UK;6. Centre for Genomic Medicine, Division of Evolution and Genomic Sciences, University of Manchester, Manchester, UK;g. Faculty of Medicine, University of New South Wales, New South Wales, 2033, Australia |
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Abstract: | ObjectiveIdentify existing resources developed and/or evaluated empirically in the published literature designed to support women with breast cancer making decisions regarding genetic testing for BRCA1/2 mutations.MethodsSystematic review of seven electronic databases. Studies were included if they described or evaluated resources that were designed to support women with breast cancer in making a decision to have genetic counselling or testing for familial breast cancer. Outcome and process evaluations, using any type of study design, as well as articles reporting the development of decision aids, were eligible for inclusion.ResultsTotal of 9 publications, describing 6 resources were identified. Resources were effective at increasing knowledge or understanding of hereditary breast cancer. Satisfaction with resources was high. There was no evidence that any resource increased distress, worry or decisional conflict. Few resources included active functionalities for example, values-based exercises, to support decision-making.ConclusionTailored resources supporting decision-making may be helpful and valued by patients and increase knowledge of hereditary breast cancer, without causing additional distress.Practice implicationsClinicians should provide supportive written information to patients where it is available. However, there is a need for robustly developed decision tools to support decision-making around genetic testing in women with breast cancer. |
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Keywords: | BRCA1 BRCA2 Breast cancer Decision aid Decision support Treatment-focused genetic testing |
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