An informed decision?: Breast cancer patients and their knowledge about treatment
Introduction
Very few would challenge the belief that patients are typically entitled to make their own medical decisions. The rationale underlying this belief is multifaceted. First, the authority to make important decisions in one's life is part of what it means to be a free, self-governing human being. Second, it is presumed that the majority of the decisions patients make for themselves are better than the decisions others can make for them. Third, there is some evidence that patients who make their own decisions tend to be more satisfied with their health care [1], [2], [3], [4], are more adherent to treatment recommendations [5], and have a better quality of life than those who do not make their own decisions [6], [7], [8], [9].
The principle that patients ought to make their own decisions has been invoked with particular frequency and conviction with regard to the choice of breast cancer surgical treatment options, as this is a decision that encompasses what is often referred to as preference-sensitive care [10], [11]. The reasons for this are two-fold. First, concerns have been raised that mastectomy is an over-treatment, that it is overused, and that many women may not receive the treatment they prefer (i.e., may prefer BCS over mastectomy, but receive mastectomy) [12], [13]. Second, there is evidence that women want to be involved in making their own treatment decisions. In a recent study, 24% of breast cancer patients stated that they wanted to take sole responsibility for deciding which surgical treatment to undergo, while 64% wanted to make the decision in conjunction with their surgeon [14]. These data suggest that while this decision is one in which many women choose to participate in, either by making their treatment decisions on their own or in conjunction with their physician, other women may choose to not be the primary decision maker. Previous research has shown that not all patients want to make their own medical decisions and that patients often have valid reasons for choosing to not participate in the decision making process [15].
Women's choices about surgical treatment for breast cancer have received enormous attention as a result of concerns that have been raised regarding lack of patient involvement in decision making [16]. Indeed, 20 states have enacted laws which require physicians to inform women about both mastectomy and breast conserving surgery (BCS) [17], [18], [19]. Furthermore, there are few significant treatment choices for which patients will have better access to information than they do for breast cancer. Randomized controlled trials have yielded definitive information about the relative benefits of the two surgical options [20], [21], [22], [23], [24]. A great deal of effort has been devoted to developing educational materials for patients. Breast cancer surgery and other treatments have been widely discussed in the media. Many women making the decision are likely to know other women who have already made the same decision. Given each of these conditions, breast cancer treatment decision making is an ideal case to investigate notions of informed decision making. If, under these conditions, patients are unable to make informed decisions, we ought to be concerned about how well patients are able to use available information to make any important decisions regarding their health.
A diagnosis of breast cancer plunges a woman into a journey filled with decisions that until recently were routinely left to surgeons, but are now more often placed in the hands of patients [25]. Yet, we have little understanding of how well informed women are when they are asked to make these decisions. What do patients know about the trade-offs between mastectomy compared to BCS with radiation with regard to survival and recurrence of disease? What socio-demographic factors are correlated with this knowledge? Where do women get their information about treatment and how does the source of information affect their knowledge? To address these questions we analyzed data from a population-based survey of breast cancer survivors recently diagnosed in the metropolitan areas of Detroit and Los Angeles. More specifically, our goal was to examine women's knowledge regarding the risks and benefits of mastectomy and BCS and to determine what factors were related to this knowledge.
Section snippets
Study population
Women who were 79 years and younger (no lower age limit) and who were diagnosed with either ductal carcinoma in situ (DCIS) or invasive disease as identified by the Surveillance, Epidemiology, and End Results (SEER) cancer registries of the greater metropolitan areas of Detroit and Los Angeles during a 14-month period from December 2001 to January 2003 were eligible for the study. SEER registries are population-based. All cases of cancer confirmed by pathology laboratories in the catchment area
Sample characteristics
Table 1 shows the weighted and unweighted characteristics of the study participants (subsequent statistics presented in text are the weighted results). The sample consisted of 1215 women who had been diagnosed with either stage 0 (DCIS) or 1 breast cancer during the time period of December 2001–January 2003 (mean time between diagnosis and completion of survey was 8.3 months). The women were, on average, 60.7 years old (range = 28–79); 76.7% were White and 15.7% were African American.
Discussion
This study revealed that the majority of breast cancer patients in two large population-based samples had levels of knowledge that are not commensurate with making informed decisions about their breast cancer surgical treatment. Less than half of our sample knew that the survival rates for mastectomy and BCS with radiation are identical. Additionally, fewer than one in five study participants knew that recurrence rates differ across local treatment. Other analyses (reported elsewhere) revealed
Acknowledgements
Portions of this work were presented at the annual meeting of the Society for Medical Decision Making in October 2003. This work was funded by a grant from the National Cancer Institute (RO1 CA8837-A1) to the University of Michigan. This project has been funded in part with Federal funds from the National Cancer Institute, National Institutes of Health, Department of Health and Human Services, under Contract Nos. N01-PC-35139 and NO1-PC-65064. Dr. Fagerlin is supported by an MREP Early Career
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