Chloe Grimmett1, Karen Pickett2, Jonathan Shepherd3, Karen Welch4, Alejandra Recio-Saucedo5, Elke Streit6, Helen Seers7, Anne Armstrong8, Ramsey I Cutress9, D Gareth Evans10, Ellen Copson11, Bettina Meiser12, Diana Eccles13, Claire Foster14. 1. Faculty of Health Sciences, University of Southampton, Southampton, UK. Electronic address: c.grimmett@soton.ac.uk. 2. Southampton Health Technology Assessments Centre, University of Southampton, Southampton, UK. Electronic address: k.t.pickett@soton.ac.uk. 3. Southampton Health Technology Assessments Centre, University of Southampton, Southampton, UK. Electronic address: jonny.shepherd@soton.ac.uk. 4. Southampton Health Technology Assessments Centre, University of Southampton, Southampton, UK. Electronic address: k.welch@soton.ac.uk. 5. National Institute for Health Research (NIHR) Collaboration for Applied Health Research and Care (CLAHRC) Wessex, University of Southampton, Southampton, UK. Electronic address: a.recio-saucedo@soton.ac.uk. 6. Southampton Health Technology Assessments Centre, University of Southampton, Southampton, UK. Electronic address: e.c.streit@soton.ac.uk. 7. Faculty of Health Sciences, University of Southampton, Southampton, UK. 8. Christie Hospital NHS Foundation Trust and Faculty of Biology, Medicine and Health, The University of Manchester, Manchester, UK. Electronic address: anne.armstrong@christie.nhs.uk. 9. University of Southampton and University Hospital Southampton, Somers Cancer Research Building, Southampton, UK. Electronic address: r.i.cutress@soton.ac.uk. 10. Centre for Genomic Medicine, Division of Evolution and Genomic Sciences, University of Manchester, Manchester, UK. Electronic address: gareth.d.evans@manchester.ac.uk. 11. University of Southampton and University Hospital Southampton, Somers Cancer Research Building, Southampton, UK. Electronic address: e.copson@soton.ac.uk. 12. Faculty of Medicine, University of New South Wales, New South Wales, 2033, Australia. Electronic address: b.meiser@unsw.edu.au. 13. University of Southampton and University Hospital Southampton, Somers Cancer Research Building, Southampton, UK. Electronic address: d.m.eccles@soton.ac.uk. 14. Faculty of Health Sciences, University of Southampton, Southampton, UK. Electronic address: c.l.foster@soton.ac.uk.
Abstract
OBJECTIVE: Identify 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. METHODS: Systematic 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. RESULTS: Total 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. CONCLUSION: Tailored resources supporting decision-making may be helpful and valued by patients and increase knowledge of hereditary breast cancer, without causing additional distress. PRACTICE IMPLICATIONS: Clinicians 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.
OBJECTIVE: Identify 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. METHODS: Systematic 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. RESULTS: Total 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. CONCLUSION: Tailored resources supporting decision-making may be helpful and valued by patients and increase knowledge of hereditary breast cancer, without causing additional distress. PRACTICE IMPLICATIONS: Clinicians 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.
Authors: Chloe Grimmett; Charlotte Brooks; Alejandra Recio-Saucedo; Anne Armstrong; Ramsey I Cutress; D Gareth Evans; Ellen Copson; Lesley Turner; Bettina Meiser; Claire E Wakefield; Diana Eccles; Claire Foster Journal: Support Care Cancer Date: 2018-06-28 Impact factor: 3.603
Authors: Rita Kukafka; Samuel Pan; Thomas Silverman; Tianmai Zhang; Wendy K Chung; Mary Beth Terry; Elaine Fleck; Richard G Younge; Meghna S Trivedi; Julia E McGuinness; Ting He; Jill Dimond; Katherine D Crew Journal: JAMA Netw Open Date: 2022-07-01
Authors: Adrianne R Mallen; Claire C Conley; Lindsay Fuzzell; Dana Ketcher; Bianca M Augusto; McKenzie McIntyre; Laura V Barton; Mary K Townsend; Brooke L Fridley; Shelley S Tworoger; Robert M Wenham; Susan T Vadaparampil Journal: Support Care Cancer Date: 2020-09-25 Impact factor: 3.603