Up to one third of episodes of underuse of adjuvant treatment for early-stage breast cancer are attributed to patient refusal.1
Refusal of treatment may be based on patient preferences after informed decision making or may be due to lack of knowledge about the risks and benefits of undergoing or foregoing therapies as well as attitudes and beliefs about cancer and its treatments.6,7,9
We found that knowledge and beliefs about adjuvant treatment, mistrust of the medical system, older age, and the presence of other comorbidities all were associated with higher rates of underuse of adjuvant breast cancer treatment. Knowledge and beliefs about adjuvant breast cancer treatment and mistrust of the medical system are mutable factors and present an opportunity for doctors to affect treatment rates through improved communication in their interactions with patients. Older age and comorbidities are patient characteristics that, although not mutable, can be used to change physician counseling behaviors and patient support when discussing treatments.
Women with poorer understanding of the benefit and risks of adjuvant treatments were more likely to experience underuse of these treatments, regardless of their levels of education or prior experiences with individuals with cancer. Disturbingly, women's knowledge of treatment benefits and risks were not affected by their physicians' communications about treatment. Women felt their physicians presented them with the information needed to make an informed decision about adjuvant treatment, and their physicians were aware of their concerns about cancer. Despite physicians' efforts to explain treatments, crucial information about the benefits and risks of adjuvant therapies was somehow lost in translation. This dissociation between physician communication about treatment options and patients' understanding about breast cancer treatment corroborates similar findings among California's medical breast cancer population.22
Chen et al22
found that patients' knowledge about breast cancer and its treatment was not related to the quantity of information provided by the physician but rather to the patients' emotional connection with their physicians. This communication disconnect raises the challenge of finding the best strategy to ensure that these messages are clearly understood.23–26
Fewer than half of women undergoing breast cancer surgery knew the impact on survival and recurrence risks of the two surgical treatment options, despite having discussed the treatment options with their doctors.9
Misunderstandings of benefit-risk information can lead to lack of adherence to treatment regimens and to decreased satisfaction with the medical encounter.27–29
New approaches, therefore, are needed to successfully educate patients to interpret medical risk data.30
Despite proliferation and implementation of decision aids,26,31–33
patients often leave their doctor offices without a clear understanding of their conditions and of recommended treatments. Decision aids may be helpful in improving patient understanding; in the case of breast cancer in which adjuvant treatment is proven efficacious, they may play a crucial role in raising awareness of treatment options.34
Computerized informational support systems have been developed to facilitate communication between provider and patient and have been utilized by women to learn about adverse effects of treatment and rates of recurrence24–26
; however, ongoing use of such tools after completion of the grant funding used to develop and test them is uncertain.37
Currently, 21 US states have regulations that require the distribution of pamphlets describing treatment options for women newly diagnosed with breast cancer.38
Enforcement of these rules is difficult at best, and their implementation and effect on decision making have not been assessed.39
Although print information may be helpful, personal contact often is preferred.40
In fact, patients who received emotional support from their physicians had better knowledge about breast cancer and its treatments, which suggests that attending to a patient's emotional needs may enable them to hear and learn more technical content and, thus, improve informed decision making.22
With increasing demands on physician time, patient navigators or other patient assistance providers may be best able to fill this void.41
A combined approach, one that offers both the information—either hard print or computerized—and a personal source to answer questions and provide support during the crucial decision-making time, likely will be most effective in eliminating failures to treat. Personal contact can start when a woman undergoes diagnostic evaluation of a suspicious breast lesion. The newly diagnosed patient with cancer then can be given breast cancer information via print pamphlet or computerized support and can be introduced to a patient assistance provider who can provide the additional evidence-based information, as well as emotional and practical support, the patient may need during this highly charged and vulnerable time.
Providers may communicate differently with patients by age, ethnicity, education, and income, which leads to disparities.40,42
We found that younger women had more accurate knowledge of treatment benefits. However, there is less convincing evidence to support the benefits of adjuvant treatments among older women.43–45
Our findings are similar to other studies, which show that older women with cancer are more likely to be undertreated.46–50
Age-related undertreatment of cancer may be due to higher prevalence of comorbidities, lower overall life expectancy, lower or adverse effects of treatment, fewer physician referrals for additional treatment, or patient preference for less invasive treatment.44
Although we can not differentiate among these causes for the lower use of adjuvant therapy among the older women in this study, the dearth of literature regarding benefits of adjuvant treatment in older women likely plays a role in both patients' and physicians' preferences about adjuvant treatment and highlights the critical need to include older women in clinical trials to strengthen the scientific base needed to inform older women's decision making.
Although others have found an ethnic difference in knowledge and beliefs,10
we did not. Of note, there was also no ethnic disparity in treatment in this cohort, although this disparity has been well documented in other populations.
Mistrust in the medical delivery system was also a significant mutable predictor of treatment underuse in our population. Ethnic differences in trust in the medical delivery system have been well documented in other chronic conditions and have been associated with poor satisfaction with care.15
Our results confirm an ongoing ethnic disparity in trust and extend it from chronic conditions to adjuvant cancer treatment. Interestingly, however, this ethnic disparity in medical mistrust did not translate into an ethnic disparity in treatment receipt, perhaps because of our study population. Survey respondents had agreed to participate in a study to look at decision making in breast cancer, but it was a study that activated the surgeons to reach out to their patients who missed follow-up oncology appointments. Because our survey responses are cross sectional, we can not determine whether it was the outreach that helped overcome the ethnic disparity in mistrust of the medical system and enable women to get treated. Equally disturbing is the association between mistrust and presence of another diagnosed comorbidity. This result suggests that increased exposure to the medical system may lead to greater mistrust, a finding that should raise a red flag to health care providers. What experiences in past encounters could have led to such negative feelings? Our data do not enable us to answer this important question, but strategies that focus on open communication and disclosure of medical errors have found specific and teachable communication behaviors associated with fewer malpractice claims for primary care physicians.51
Such approaches may be applied in communicating with patients with cancer who have had negative medical experiences in the past that appear to affect attitudes and seem to bear on present treatment decisions.
A major strength of this study is the comparison of beliefs and experiences among an ethnically diverse population of treated and untreated women who underwent surgery for breast cancer. This study addresses rates of adjuvant treatments proven to increase survival and factors associated with these treatments, whereas many other studies focus only on the surgical decision. Survey questions were based on both focus group findings and previous studies that evaluated beliefs about breast cancer.52–55
The survey was conducted via telephone, which reduced the impact of limited literacy among respondents.
Our study also has important limitations. We recruited our survey participants from a physician-centered intervention designed to reduce underuse by closing the referral loop between surgeons and oncologists. Although the study was directed at physicians, women had to consent to participate in the survey and chart review. Older women were more likely to refuse to participate in the intervention study, which may have influenced our findings, as older women tended to be more likely to experience underuse and had lesser understanding of adjuvant treatment benefits. This study was conducted in New York City and was in English and Spanish, which limits its generalizability to other locales and languages. Although our findings are local, such beliefs may have more global relevance, particularly given that other studies have demonstrated underlying health and cultural beliefs to be important barriers to cancer screening, both among larger US populations and in the United Kingdom.6,56
Despite physicians' discussions of breast cancer treatment options, patients continue to lack important knowledge about the treatments, although this is knowledge that is needed to make truly informed decisions. To reduce underuse of adjuvant therapies, all patients should be educated regarding the benefits and risks of treatment; improved patient knowledge may affect underuse of adjuvant therapy overall and is likely to have a particularly potent effect in older-age populations. Physicians also should address directly issues of trust, particularly with minority-population patients and patients with comorbidities.