recently argued that, in an effort to enhance treatment outcomes that are salient for breast cancer patients, key strategies need to be developed in three areas: (1) emphasizing evidence-based treatment; (2) including patient preferences when different treatment alternatives provide equivalent disease-focused outcomes; and (3) providing adequate time for patient–physician communication regarding disease- and patient-focused outcomes, including the provision of training for clinicians so that they can adequately facilitate these discussions. Our work supports this framework, and offers some provocative findings from a large population-based sample that should be useful and informative to researchers and policymakers who are committed to devising key strategies for improving quality of care for cancer patients.
The results presented here support and resonate with a number of findings in the current literature. Our findings suggest that while there is a high level of satisfaction regarding the type of surgery received and the surgery decision process, one out of four patients scored low on at least one of our measures of satisfaction. Women who are socioeconomically disadvantaged or from ethnic minority groups were more likely to report low satisfaction or decision regret. In addition, women who indicated they had some level of involvement in the surgical treatment decision were less likely to have low satisfaction and decision regret, consistent with previous peer-reviewed studies (Moyer and Salovey 1998
; Deadman et al. 2001
; Liang et al. 2002
Some of the results reported here, however, are inconsistent with prior research and editorials regarding breast cancer surgery. This includes that there is a significant and positive association between patient decision involvement and receipt of mastectomy, and that the match
between patient preferences and their actual level of involvement is a strong indicator of satisfaction and decision regret. While having less participation than preferred is associated with low satisfaction and regret, having more
involvement than preferred also is a significant risk factor. Taken together, these results suggest that some of the assertions that permeate the breast cancer research and advocacy literature—including that increasing patient involvement in the decision process will automatically lead to higher rates of BCS—is overly simplistic. These results also suggest caution in using BCS rates as performance measures or quality indicators for health plans or health care systems (Keating et al. 2002
; Lantz, Zemencuk, and Katz 2002
The finding that mastectomy without reconstruction, when controlling for sociodemographic and decision context variables, may be associated with lower levels of satisfaction and decision regret is consistent with some but not all prior research. A key finding across a number of prior studies is that having a choice or options—rather than receiving a specific type of surgery itself—is a fundamental factor for women's satisfaction and psychosocial adjustment to breast cancer surgery (Street and Voigt 1997
; Lantz, Zemencuk, and Katz 2002
). Our finding that patients with mastectomy without reconstruction were at higher risk for dissatisfaction and decision regret should not be interpreted to mean that mastectomy is an inferior treatment choice or that more women should be receiving BCS. Mastectomy with or without reconstruction is a viable surgical option for breast cancer patients, and there are several reasons that a woman might prefer mastectomy over BCS (including that it confers a reduced risk of recurrence and that for many women means they do not need radiation therapy). Indeed, in this sample, women receiving mastectomy—particularly those under 50—were more likely than women receiving BCS to report that concerns about recurrence of disease and radiation exposure influenced their surgery decision (Katz et al. 2004
). Women who received a mastectomy were also less likely to report that concerns about body image influenced their surgical treatment decision.
In addition, in this study, the vast majority of women receiving mastectomy were satisfied. For example, although significantly different, the prevalence of low satisfaction with the surgery received was low among both women receiving mastectomy without reconstruction (14.1 percent) and those receiving BCS (9.7 percent). Furthermore, those receiving reconstructive surgery—an increasingly used option for breast cancer patients—were not at risk for low satisfaction with the process or for decision regret, compared with those receiving BCS. A primary area of concern in breast cancer care has been in regard to women who were offered only mastectomy for their surgical treatment (Montini 1997
). Perhaps the pendulum has now swung to a place where we also need to be concerned about patients who are only offered BCS as surgical option. In our sample, only one-third of the women who perceived they were not offered a surgical choice reported any contraindication (e.g., multifocal disease) to either type of surgery, and the majority (66 percent) of these women received BCS. Again, the quality of care lens should be on how patients are appraising their treatment and the decision process, not on the relative rates of mastectomy versus BCS.
Wennberg (2000a, b) and others emphasize the importance of involving patients in medical decision making, especially in the context of preference-sensitive care. As Guadagnoli and Ward (1998)
argued in regard to breast cancer surgery: “Patient participation in decision making is justified on humane grounds alone.” However, it is important to consider not only patient preferences regarding treatment options, but preferences regarding their own level of involvement in the decision-making process. While it is encouraging that the majority of women reported congruence between their actual and preferred levels of involvement in the surgery decision, a nontrivial number of women reported they were more involved than preferred. Of the women in our sample who had one or more negative satisfaction outcome, 29.9 percent reported having more participation than desired. Attempting to foster greater patient participation in treatment decisions could further decrease satisfaction and increase decision regret among these women. There is a growing literature that underscores our finding that not all patients want
to be full or lead participants in an important medical decision during a health crisis, and that pressuring some of these patients to do so could have negative psychosocial consequences (Degner and Sloan 1992
; Benbassat, Pilpel, and Tidhar 1998
; Aurora and McHorney 2000
Our study results suggest that most but not all patients perceive that their level of involvement in the surgery decision matched their preferences. Other studies have reported slightly lower levels of concordance (Degner et al. 1997
; Keating et al. 2002
; Janz et al. in press
). If a match between patient preferences and actual involvement is indeed important, then a key goal for clinical practice is to match patient participation with preferences regarding decision control (Keating et al. 2002
). This means that clinicians not only need to assess patient preferences regarding the type of surgery preferred, they also need to assess the “type” of decision maker who is before them, ostensibly before any conversations regarding options and choices commence. (Pierce 1993
; Street et al. 1995
; Pierce 1996
; Robinson and Thompsom 2001
Efforts to improve tailored interactions with patients present a number of challenges, including that this is a labor-intensive endeavor (Charles, Gafni, and Whelan 1997
). As such, a strong case needs to be made that patient satisfaction along all of its dimensions matters. At the present time, there is evidence to suggest that satisfaction with the type of breast cancer surgery received and key elements of the decision process (i.e., the perception of choice) have a significant impact on some dimensions of quality of life (Fallowfield et al. 1990
; Degner et al. 1997
; Street and Voigt 1997
; Mandelblatt et al. 2003
). Increased understanding of patients' satisfaction regarding treatments received and the decision-making process in relation to quality of life and psychosocial adjustment is critical for the development of effective clinical interventions and sound public policy aimed at cancer patients.
Given the evidence that self-appraisals of satisfaction with surgery and the decision-making process are associated with income and education, additional research should focus on socioeconomically disadvantaged subpopulations. In addition, minority women in our study had higher levels of dissatisfaction and decision regret, although this is not fully explained by the higher use of mastectomy in these groups. The interrelationships between type of surgery received, satisfaction and ethnicity need further exploration (Murray-Garcia et al. 2000
This study has several limitations worth noting. First, the study sample, although population-based, is representative only of women from two major metropolitan areas in the U.S. The extent to which our findings are generalizable to rural women or to women from other urban areas is unclear. Also, the sample in Los Angeles excluded a subset of cases (Asian women and U.S.-born women under the age of 50 with invasive disease), thus the generalizability of the results is somewhat compromised. Second, given the cross-sectional nature of the study, the results demonstrate associations between factors rather than causal relationships. For example, although there is a strong and significant association between less involvement with the decision process than preferred and low satisfaction on both dimensions, we cannot state unequivocally that increasing the participation of patients who desire more involvement will improve satisfaction.
Third, the satisfaction with process variable required women to recall events that took place on average 8 months earlier. In addition to potential recall bias, subjects' appraisals in regard to all dependent variables under study may have been affected by current health status and quality of life (QoL) (Kane, Maciejewski, and Finch 1997
). We did conduct some analyses that included a measure of health-related QoL (Aaronson, Ahmedzai, and Bergman 1993
). While we found that women with lower QoL scores were more likely to report low satisfaction and decision regret, the results also showed that including QoL in the model had no impact on any of the other relationships or associations observed. Thus, the findings reported here are robust to the inclusion of current health-related QoL in the analysis.
Despite these limitations, the strengths of this work include that the sample was large with an oversample of women with DCIS and black women, that patient information was collected relatively soon after the treatment decision was made, and that a wide range of sociodemographic, psychosocial, and clinical data were gathered for each patient. Also, unlike most prior studies, there were enough women who received mastectomy with reconstruction that we could look at this group separately from those receiving mastectomy alone. In addition, this is one of the first population-based studies to collect detailed information on breast cancer patient involvement in the decision process and to solicit appraisals of satisfaction with the type of surgery received separately from the decision-making process. This allowed us to investigate different dimensions of satisfaction simultaneously, all in the context of patient preferences regarding decision involvement. Such research should help us to move past the labeling of mastectomy as a problem of “less progressive” or “poor” quality of care with an easy solution of increased patient involvement, to a more nuanced perspective on this complex issue (Collins, Kerrigan, and Anglade 1999
; Lantz, Zemencuk, and Katz 2002
). The results should also be of interest to those studying other types of preference-sensitive care.