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Originally published as JCO Early Release 10.1200/JCO.2006.07.1159 on September 18 2006 © 2006 American Society of Clinical Oncology. What Is the Impact of Shared Decision Making on Treatment and Outcomes for Older Women With Breast Cancer?
From the Department of Oncology, Georgetown University Medical Center; and the Cancer Control Program at Lombardi Comprehensive Cancer Center, Washington, DC Address reprint requests to Jeanne Mandelblatt, MD, MPH, Georgetown University, 3300 Whitehaven Blvd, Suite 4100, Washington, DC 20007; e-mail: mandelbj{at}georgetown.edu
PURPOSE: Shared decision making (SDM) has been recommended as a standard of care, especially when there are treatment alternatives or uncertainty in outcomes. However, we know little about use of SDM in cancer care, and even less is known about SDM in older patients. We describe patient and physician determinants of SDM in older women with breast cancer and evaluate whether SDM is associated with treatment patterns or short-term outcomes of care. PATIENTS AND METHODS: Women age 67 or older treated for early stage breast cancer in 29 sites from five geographic regions comprise the study sample (N = 718). Data were obtained from patients by in-person and telephone interviews. Physician data were collected via survey, and medical records were reviewed to ascertain comorbidity and tumor characteristics. Random effects and logistic regression models were used to assess associations between SDM and other factors. RESULTS: Women who were age 67 to 74 years (v 75 or older) were accompanied to consultation and who sought information reported the highest SDM, after considering covariates. While SDM was not associated with surgical treatment, greater SDM was associated with higher odds of having adjuvant treatment, controlling for clinical factors. Greater SDM was also associated with improved short-term satisfaction. CONCLUSION: SDM plays an important role in the process of care for older women with breast cancer. Physicians treating this growing population have a simple, but powerful tool for improving outcomes within their graspspending time to engage and involve older women in their breast cancer care.
In 2005, approximately 211,240 women in the United States were diagnosed breast cancer1; more than half of these new patients were among the 13% of the female population that was 65 or older (hereinafter referred to as older women).2 Older women are also the most rapidly growing segment of the population, so that by 2030 one in five women is projected to be 65 or older.3 This demographic imperative, coupled with exponential increases in incidence rates of breast cancer with advancing age, will result in a dramatic increase in the absolute number of older women diagnosed with and treated for breast cancer over the coming decades.4 These older women are faced several important decisions and uncertainty in making their breast cancer treatment choices, including a choice between mastectomy (MST) and breast sparing surgery,5,6 whether to have radiation after breast-conserving surgery (BCS),7 and balancing the risks and benefits of adjuvant therapies.8-10 In such situations, shared decision making (SDM) has been suggested as the preferred approach to treatment decisions and has been linked with positive patient outcomes.11-13 However, there is a paucity of research about SDM in older patients. In this study, we use data from a large, national prospective cohort of older women to assess the correlates of SDM, evaluate if SDM is associated with treatment, and assess whether SDM is associated with short-term satisfaction with care and subjective impact of breast cancer on women's lives. We use the construct of SDM described by Charles et al14 that highlights participation in the process of decision making, information sharing, and elicitation of preferences.
Setting and Study Population Data for this institutional research board-approved study were collected as part of the breast cancer Outcomes and Preferences for Treatment in Older Women Nationwide Study (OPTIONS) project. The study procedures have been described elsewhere.6,15 Briefly, the study included a convenience sample of 29 hospitals in five geographic regions (Massachusetts, Texas, District of Columbia, western New York State, and New York City) between November 1, 1995, and September 30, 1997. Women were eligible if they were community dwelling, 67 years of age or older, spoke English, and had histologically confirmed primary T1 or T2, No, N1, or Nx, or Mo invasive breast cancer. Women with ductal carcinoma in situ, bilateral cancer, or multicentricity were excluded because BCS and MST may not have been considered equivalent choices for these women. Based on pathology reports 1,932 potentially eligible women were identified; 555 of these women were subsequently found to be ineligible due to prior breast cancer, second primary breast cancer, nonlocal or unknown stage (47%), cognitive impairment (9%), severe physical impairments (8%), bring a non-English speaker (9%), administrative delays (20%), residence in a nursing home (4%), and death within 3 months of diagnosis (3%). After these exclusions, 1,377 women were eligible. Physicians' consent was obtained to contact 1,159 (84%) of these eligible women. Of the 784 women (68%) who agreed to participate, 66 were found to be ineligible after the interviews, resulting in 718 women in the final sample. Surgeons (N = 194) for the 718 participants were contacted to complete a survey; 138 surgeons (70%) returned the survey. Of these, there were 613 pairs (85%) of patients with matching surgeon data. Overall, included and excluded women were similar, although excluded women were older.
Data Collection
Measures Patients' overall satisfaction with breast cancer surgery and other treatment was assessed by a single item on a 5-point Likert type response scale ranging from "very satisfied" to "very dissatisfied." Because most of the participants (78.3%) selected "very satisfied," we dichotomized this variable into "very satisfied" versus all other responses. Self-rated impact of breast cancer on women's lives was also measured using a simple 5-point Likert scale.
Predictor Variables
Controlling Variables
Data Analysis
The women in our sample were on average 75 years old. The majority of patients were white and most had private supplemental insurance in addition to Medicare coverage (Table 1).
What Factors Were Associated With SDM? Women in the younger age group reported higher SDM score than women who were 75 or older (mean SDM score, 62.9 v 54.6; P < .01; Table 1). Of note, women who reported that someone accompanied them to treatment appointments also reported significantly higher SDM than women who went to appointments by themselves (62.1 v 51.9; P < .01). Women who sought information from someone other than their physicians also reported greater SDM than women who relied on physicians alone for information (63.1 v 55.6; P < .01). Finally, women who reported having a treatment choice reported significantly higher SDM levels than those who felt they did not have a choice. In regression analysis (Table 2), after controlling for other variables, only age, being accompanied to appointments, and information style were associated with SDM.
Does SDM Influence Decisions About Either Local Treatment or Adjuvant Treatment? There were no differences in SDM scores between women who underwent MST and those who received BCS (data not shown). However, SDM was significantly associated with adjuvant treatment use after considering other factors (P = .04; Table 3). Interestingly, there was a significant interaction between age and SDM, with SDM only being significantly related to adjuvant treatment among women ages 67 to 74, and not among women 75 years and older (P < .02 for interaction term). Among women 67 to 74 years, the odds of having recommended adjuvant therapy were 15% higher for each 10-point increase in ratings of SDM (95% CI, 1.03 to 1.28).
Does SDM Influence Satisfaction With Treatment or Subjective Impact of Cancer on a Woman's Life? Women who rated SDM about their treatment more highly reported greater short-term global satisfaction with their treatment, after considering age, treatment received, and education (P = .003; Table 4). SDM was also significantly associated with subjective ratings of the impact of breast cancer on women's lives. However, this effect was in the opposite direction than expected, with women who perceived greater SDM reporting that breast cancer had a greater impact on their lives than women who reported less SDM (odds ratio, 1.10; 95% CI, 1.04 to 1.16 for every 10 point increase in SDM).
The treatment of breast cancer is a good example of a situation where SDM would be appropriate because equally effective surgical choices exist and there is uncertainty about adjuvant therapy. Our study is among the first large cohort studies to examine the impact of SDM on treatment and its outcomes among older women with early stage breast cancer. We found that older women who brought others into their treatment consultation and those who were information seekers were likely to report high levels of SDM. Interestingly, SDM was not associated with the choice between MST and BCS, but was associated with the more controversial use of adjuvant treatment. Of note, this latter finding was true for women who were 67 to 74 years old, whereas SDM was not a factor in adjuvant treatment use in women 75 years or older. Use of SDM appears to be associated with patient satisfaction with treatment. However, SDM had a negative association with impact on women's lives. In other studies of older breast cancer patients, seeking information outside of the physician encounter occurs frequently.11,19 In our study, seeking outside information was a correlate of SDM. Women in our study who had someone to accompany them to appointments also reported more SDM than those who went alone. This is similar to the result reported by Silliman et al11 that older women would have liked someone accompany them to appointments to help know what questions to ask. These types of patient behaviors also appear to affect physicianpatient interactions. For example, Charles et al14 noted that oncologists felt that patient support and information was a facilitator of SDM. We expected that SDM would influence use of local surgery. A few studies have found that women (mean age, 60 years) who reported the greatest involvement in decision making actually chose MST.20,21 In our prior work, we have found that older women's preferences were related to surgery, with women who preferred "getting it over with" being more likely to have MST and women more concerned with their body image receiving BCS.22,23 These patterns would seem to imply that women were involved in SDM. Possible explanations for our negative result include possible insensitivity of our measure, differences in the aspect of SDM measured in our versus other studies, our lack of data on women's desired level of SDM, and the older age of our cohort compared with that of Katz et al.20 SDM was associated with adjuvant treatment choices, an area with more clinical uncertainty, suggesting appropriate use of SDM. However, this finding was the result of a relationship among women ages 67 to 74, but not among women age 75 or older. This age effect may be result of several factors. First, it is possible that providers are involving younger women with more extensive disease in adjuvant decisions, while not recommending these modalities for the older group of women. Because we had few women with more advanced disease (stage 2b), we could not fully explore this possibility. Second, it is also possible that physicians are communicating differently with different age groups of women. That this communication difference occurred is suggested by several studies that note that physicians spend less time with and involve their older patients less often in their care than their younger patients.24-26 Third, it is also possible that there are generational differences, with the younger cohort being more used to taking an active role in their care, and the older group being more comfortable in following physician recommendations.11,26-29 Finally, there may have been differences in cognition and ability to engage in SDM by age. It is not possible to determine which of these ideas explains our results. Direct observation of interactions within the patient-physician dyad could be helpful in understanding the patterns we observed and designing interventions to improve use of SDM.30 Our results show that more SDM is associated with greater satisfaction with treatment. In other research, women who feel that they have shared in the decision-making process are more likely to report being satisfied and have better post-treatment adjustment to cancer than women who feel that they did not participate.11,13,31-33 For example, Silliman and her colleagues11 found that involvement in care and ratings of patient-physician communication about treatment were positively associated with measures of well being in a sample of women age 55 or older. In addition, women who were engaged in the decision role that most matched their preferences were most likely to report satisfaction with breast cancer care.21 We would have hypothesized that SDM would ameliorate many of the negative aspects of breast cancer. However, we found the oppositewomen who reported more SDM rated the subjective burden of breast cancer greater than women who reported less SDM. It is possible that women who took a more active role in their treatment decisions were, by nature, more concerned about their health and more worried about the disease. That this may be the case is supported by the result that women who were more depressed at diagnosis rated the impact of the disease as more than women who were less depressed. However, the association of SDM on impact persisted after controlling for baseline mood, suggesting that other pathways were operating. One possibility is that women who engaged in SDM also underwent more aggressive treatment and that we captured the short-term negative impact of treatment on disease burden. There are several caveats that should be considered in evaluating our results, including measurement of SDM, generalizability, and year of the study. Our measure included only four questions and may not have captured all domains of SDM.14 However, because there was a strong association between our measure of SDM and women's report of having had a choice in their cancer treatments, the instrument had some criterion validity. In other cancer literature, SDM has been used to describe a more limited construct of decisional preferences (for example, whether the patient, the doctor, or both made/should make the decision).21,34,35 Adding to the complexity of measuring SDM, it has been reported that there are differences in patient and provider perceptions of what actually occurred in the visit.36 We relied on patient report for our indicator of SDM. We also did not evaluate the match between women's desire for SDM and actual SDM; concordance has been found to be a significant predictor of satisfaction and/or treatment selected.21,32 The last aspect of our measurement of SDM is that all data were collected in a cross-sectional manner, so that we can not draw conclusions about causality. Also, we were measuring some SDM retrospectively, since we were asking about treatment decision making 6 to 24 weeks after diagnosis. Our cohort was drawn from a convenience sample of hospitals and does not represent all regions of the United States, so that our results may not be representative of the US population. Our cohort was treated from 1995 to 1997 and patterns of care have been changing over time. However, relationships between SDM, treatment, and outcomes should be internally valid and not effected by the time period. Despite these caveats, our results demonstrate that SDM plays an important role in the process of care for older women with breast cancer. Physicians treating this growing population have a simple, but powerful tool for improving outcomes within their grasp spending time to engage and involve older women in their breast cancer care.36,37
The authors indicated no potential conflicts of interest.
published online ahead of print at www.jco.org on September 18, 2006. Supported by Grant No. RO1 HS 08395 from the Agency for HealthCare Research and Quality, Grant No. K05 CA96940 from the National Cancer Institute, and Grant No. KO7 AG191655 from the National Institute on Aging. Presented at the 24th Annual Meeting of the American Society of Preventive Oncology, San Francisco, CA, March 15, 2005. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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Copyright © 2006 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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