Purpose: To report Chinese women's preferred and perceived participation in breast cancer treatment decision making (TDM), describe influences on women's participation preference and participation congruence (PC) (correspondence between preferred and actual amount of participation in TDM), and explore subsequent satisfaction with TDM.
Patients and methods: Of 172/211 eligible and available Chinese women recently undergoing breast cancer surgery at one of six Hong Kong government hospitals 154 (89.5%) were recruited. Within 12 days after surgery, women provided interview information on preferred and perceived TDM participation, satisfaction with TDM consultation, difficulties in TDM, and medical and demographic information.
Results: Half (55%) reported a treatment choice: 33% wanted the choice to be their own, 59% wanted to share and 8% wanted to delegate the decision. Only age predicted participation preference with older women preferring a more passive role. Eighty percent of women participated as much as, 13% more than and 6% less than desired. Adjusted for age, women reporting PC had fewer difficulties in TDM (beta = 0.21, p = 0.009) than women not reporting PC, while over-involved women had more doubts about their choice (beta = -0.23, p = 0.005). PC was associated with being offered a treatment option (chi2 = 15.59, p < 0.001) and surgeons expressing a surgical preference (chi2 = 6.63, p = 0.036). Satisfaction was unrelated to PC.
Conclusion: Most Chinese women want shared TDM and to know their surgeon's treatment preference. Over-involved women are at greater risk of difficulties and doubts in TDM and under-involved women perceive a lack of time and information to make their decision.