Shared Decision Making in women testing for a BRCA 1/2 mutation.
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KUN Katholieke Universiteit Nijmegen, 21 februari 2005
Promotor : Daal, W.A.J. van Co-promotores : Stalmeier, P.F.M., Verhoef, C.G.
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SubjectEBP 4: Quality of Care; NCEBP 4: Quality of hospital and integrated care; UMCN 1.5: Interventional oncology
Women with a BRCA1/2 mutation have a high genetic risk of developing breast and ovarian cancer. They face the difficult choice between screening and prophylactic surgery for the breasts and ovaries. We have developed a shared decision making program to prepare these women for decision making. The shared decision making program consisted of two decision aids. The decision aids have been developed as adjuncts to standard genetic counselling and were evaluated in a randomized trial. The study included both women affected and unaffected with cancer testing for a BRCA1/2 mutation. The first decision aid consisted of a brochure and video providing information on screening and prophylactic surgery and their consequences. It was provided either before or after the DNA-test result. This decision aid had no impact on well-being neither on decision related outcomes. Beneficial effects were found on information related outcomes. These effects occurred irrespective whether the decision aid was presented before or after the DNA-test result. No interaction effect was found between the DA and the personal history of cancer. The second decision aid consisted of two value assessment sessions, using the time trade-off method, followed by individualized treatment information based on (quality adjusted) life expectancy derived form a decision model. This decision aid only had an effect on the long term (9 months after the test result). Women reported less intrusive thoughts about cancer, a better general health, and tended to be less depressed. Furthermore, the SDMI strengthened treatment preferences and increased the feeling of having weighed the pros and cons. A differential impact was found in women affected with cancer versus unaffected women. Unaffected women benefited from this decision aid, while affected women tended to experience detrimental effects. The effects of the two decision aids are complementary. Thus, preferably, the complete support package should be offered.
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