Evaluation of a shared decision making program for women suspected to have a genetic predisposition to breast cancer: preliminary results.
BACKGROUND
Women suspected to have a genetic predisposition to breast cancer face the difficult choice between regular breast cancer screening and prophylactic mastectomy. The authors developed a shared decision making program (SDMP) to support this decision.


OBJECTIVE
To evaluate the SDMP in terms of practicality, beneficial effects, and patient satisfaction.


METHODS
A one-group pretest-posttest design was used.


METHODS
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, satisfaction, program acceptability, and emotional reaction to the program information.


RESULTS
Seventy-two women, most of whom were awaiting the genetic test results, participated. Decision uncertainty (effect size d = 0.37) and decision burden (d = 0.41) were reduced by the SDMP. Subjective knowledge (averaged d = 0.94) and risk comprehension were improved. The women were satisfied with the SDMP and found its rationale acceptable. Women who had strong 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, especially about prophylactic mastectomy and among gene carriers. Beneficial effects were observed irrespective of whether genetic status was known, suggesting 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 participate is characteristic of emotional stability.
Stalmeier
P F
PF
Nijmegen Institute for Cognition and Information, The Netherlands. Stalmeier@nici.kun.nl
Unic
I J
IJ
Verhoef
L C
LC
Van Daal
W A
WA
D000328:Adult; D001943:Breast Neoplasms / Q000235:genetics* / Q000517:prevention & control / Q000523:psychology; D017281:Cost of Illness; D003657:Decision Making; D003661:Decision Support Techniques; D005260:Female; D006580:Genetic Carrier Screening; D020022:Genetic Predisposition to Disease / Q000235:genetics* / Q000523:psychology; D005820:Genetic Testing / Q000523:psychology; D006801:Humans; D008403:Mass Screening / Q000523:psychology; D015411:Mastectomy, Modified Radical / Q000523:psychology; D008875:Middle Aged; D010358:Patient Participation; D017060:Patient Satisfaction; D018570:Risk Assessment