Evaluation of a shared decision making program for women suspected to havea genetic predisposition to breast cancer: Preliminary results

Background Women suspected to have a genetic predisposition to breast cance r face the difficult choice between regular breast cancer screening and pro phylactic mastectomy. The authors developed a shared decision making progra m (SDMP)to Support this decision. Objectives. To evaluate the SDMP in terms of practicality, beneficial effects, and patient satisfaction. Design. A o ne-group pretest-posttest design was used. Measures. Decision uncertainty, decision burden, subjective knowledge, and risk comprehension were assessed before and after the SDMP. Additional measures were obtained for concepts related to breast cancer concern, desire to participate in the program, sat isfaction, program acceptability, and emotional reaction to the program inf ormation. Results. Seventy-two women, most of whom were awaiting the geneti c test results, participated. Decision uncertainty (effect size d = 0.37) a nd decision burden (d = 0.41) were reduced by the SDMP. Subjective knowledg e (averaged d = 0.94) and risk comprehension were improved. The women were satisfied with the SDMP and found its rationale acceptable. Women who had s trong emotional reactions to the information benefited less from the SDMP, whereas women with strong desires to participate in the decision benefited more. Conclusions. There is a need to give patients more information, espec ially about prophylactic mastectomy and among gene carriers. Beneficial eff ects were observed irrespective of whether genetic status was known, sugges ting that information concerning treatment options should be;made available as soon as DNA testing begins. The better psychological outcomes of women with stronger desires to participate may arise because the desire to partic ipate is characteristic of emotional stability.