Commentary—surgical decisions after breast cancer: can patients be too involved in decision making?

Health Services Research, June, 2005 by Nananda F. Col, Christine Duffy, Carol Landau

In this month's Health Services Research Lantz Janz, and Fagerlin et al. explore patient satisfaction with decisions about surgical treatments for early stage breast cancer among a population-based sample of women. Deciding whether to undergo breast conserving therapy (BCT) or mastectomy remains difficult for women diagnosed with early stage breast cancer. Despite the substantial differences in the side effects of these treatments, no survival differences have been shown up to 20 years later among women with stage I and II cancer (Veronesi et al. 1981; Fisher et al. 1985; Sarrazin et al. 1989; Blichert-Toft et al. 1992; Lichter et al. 1992; Early Breast Cancer Trialists' Collaborative Group 1995; Morris et al. 1997; van Dongen et al. 2000; Fisher et al. 2002). Although randomized trials suggested higher quality of life (QoL) and satisfaction among women receiving BCT as compared with mastectomy (Moyer 1997; Curran et al. 1998), a substantial percentage (36 percent) undergo mastectomy. Despite the psychosocial benefits associated with reconstruction after mastectomy, most women (60 percent) do not choose reconstruction (Cancer Statistics Review 1973-1989; Mueller et al. 1988; Sorrentino et al. 1988; Handel et al. 1990; Brown 1991; McKenna et al. 1991; Schain 1991; Dowden and Yetman 1992; Nognchi et al. 1993; Corral and Mustoe 1996; Street and Voigt 1997).

How do we explain such decisions? Decisions about surgery are made at a time of heightened anxiety when it may be difficult for patients to understand complex information regarding treatments (Jefford and Tattersall 2002). Women may not be aware of the evidence favoring BCT, or the quality of the evidence may be lacking. The beliefs and practices of the patient's oncologist or surgeon may influence the decision, as evidenced by geographic variations in surgical practices (Foster, Farwell, and Costanza 1995; Steele et al. 1995; Goel, Iscoe, and Sawka 1996; Kotwall et al. 1996). Factors such as the cost and availability of the procedures and insurance coverage may also influence these decisions (Roetzheim et al. 2002). The federal Women's Health Rights and Cancer Act of 1998 mandated that insurance companies cover breast reconstruction surgery but there have been some difficulties in implementation.

Although decisions about surgical treatments for breast cancer are characterized as preference-based, up to 29 percent of women in parts of the U.S. do not receive adequate discussion of the different surgical treatments for breast cancer, and fewer than half achieved their preferred level of participation (Degner et al. 1997; Keating et al. 2002).

In the present study, the authors use three measures of satisfaction among women who underwent either BCT, mastectomy, or mastectomy with reconstruction: satisfaction with the type of surgery received, satisfaction with the process by which the surgery decision was made, and feelings of regret concerning the type of surgery received. Although overall levels of satisfaction were high among women in all surgical treatment groups, approximately one in four women scored low on at least one measure of satisfaction. Ethnic minority groups and women of lower socioeconomic status (SES) were more likely to report decision regret, while woman who reported at least some involvement in the decision-making process were less likely to report regret. While other studies have suggested that women of lower SES and some ethnic/minority groups are more likely to prefer a more passive role in clinical decision making (Benbassat, Pilpel, and Tidhar 1998), the finding that women of lower SES and racial/ethnic minorities were at increased risk of dissatisfaction with their breast cancer treatment decision has not been reported in a large population-based study.

Surprisingly, this study found that patients who were more involved in decision making were more likely to undergo mastectomy. This finding appears inconsistent with previous research suggesting that patients who are more informed in treatment decisions are less likely to choose more intensive surgical treatments (O'Connor et al. 1999); one study reported a statistically significant reduction in major elective surgery when using a decision aid compared with usual care (RR 0.76, 95 percent CI: 0.6-0.9) (Murray et al. 2001). It also runs counter to the prevailing view that BCT is what women would choose if given the opportunity by their physicians (Masood 2003). Although women more involved in the decision making were more likely to undergo mastectomy, the present study also shows that women who chose BCT were less likely to report low satisfaction or decision regret than women who received mastectomy (with or without reconstruction). However, these differences were small and of uncertain clinical significance. Clearly, being involved in decision making is not sufficient to ensure that women are satisfied with their decisions, nor does being involved entail being informed.

Consistent with previous research, the authors report that having too little involvement in the decision-making process can increase dissatisfaction. Unexpectedly, they also find that having too much involvement increases dissatisfaction. Nearly 30 percent of women who had at least one negative satisfaction outcome are reported as having more participation than desired, leading the authors to conclude that "Attempting to foster greater patient participation in treatment decisions could further decrease satisfaction and increase decision regret among these women." They also suggest that it is the "match" between the desired and actual level of decision-making participation that matters most in decision satisfaction. But how well is this conclusion supported by the data presented?