Patients Found to Lack Knowledge about Breast Cancer Treatment
ANN ARBOR, Mich., July 31 (MedPage Today) -- More than half of breast cancer patients are ill informed about the risks and benefits of treatment options, and minority patients know even less, investigators here reported.
In a SEER registry of 1,132 patients, plus a survey of 277 surgeons, 52% of patients did not know that five-year survival is similar with mastectomy and breast-conserving surgery, Sarah Hawley, Ph.D., of the University of Michigan, and colleagues reported in the August issue of Health Services Research.
Among African Americans and Latinas and others, almost two thirds did not know that survival odds are similar with the two types of surgery.
Additionally, 63% of the patients did not know that the two treatment options are associated with similar recurrence rates. Fewer than 30% of minority patients knew the recurrence rates are similar.
The findings remained consistent across geographic boundaries, surgeon characteristics, and hospital characteristics.
"Decision tools to improve informed decision making for breast cancer patients are needed across surgeons and treatment settings, and may need to be tailored to race/ethnicity, acculturation, and literacy," the authors concluded.
Despite evidence of similar outcomes with mastectomy and breast conservation, rates of radical surgery remain high. Additionally, studies have noted wide geographic variations in surgical treatment of breast cancer. The two factors have raised concern that many breast cancer patients might not be fully informed about treatment options, the authors said.
Previous studies have documented low knowledge levels about the risks and benefits of mastectomy and breast conservation with radiation, even among patients who have undergone treatment, the authors continued. Studies also have shown racial/ethnic disparities in knowledge about breast cancer treatment.
However, prior studies had not examined the influence of factors such as surgeon and hospital characteristics on knowledge disparities related to breast cancer treatment. To examine those influences, the authors analyzed data from SEER registries in Los Angeles and Detroit.
Patient clinical data and responses to SEER surveys were merged with surgeons' survey responses.
The authors focused on patient responses to two survey questions assessing knowledge about five-year survival and recurrence rates associated with mastectomy and breast conservation with radiation therapy.
Overall, 54% of the patients answered the question about survival and 47.6% said they did not know the answer. However, 6% of respondents who answered the question said five-year survival is not similar with mastectomy and breast conservation, meaning that more than half the patients did not know the correct answer.
The authors found that 52% of the patients answered the question about recurrence, and 47.6% said they did not know. Of those who answered the question, almost 15% of those who answered the question said that the recurrence rate is not similar between mastectomy and breast-conserving surgery.
When responses were analyzed by race/ethnicity, the authors found that 57% of white patients answered the survival question correctly, compared with 34% of African Americans and 37% of Latinas/others. Responses to the question about recurrence risk showed that a little more than 40% of white patients answered correctly, compared with fewer than 30% of African Americans and Latinas/others.
The authors analyzed the patients' knowledge according to whether they were treated by a general surgeon or a surgeon specializing in breast cancer procedures and whether patients were treated at a community hospital or an NCI-designated comprehensive cancer center. The results did not change appreciably in those analyses.
The authors found that patients were more likely to answer the survey questions correctly if they reported that their surgeons discussed both treatment options (mastectomy and breast conservation).
"It's important for women to be able to do what we call a high-quality decision-making process," said Dr. Hawley. "That would mean that the decision needs to be well-informed, based on an accurate knowledge of the risks and benefits of the options, and it also needs to be based on their preferences. If women do not make an informed decision, they're more likely to be dissatisfied down the road with the treatment they received."
The authors noted several limitations including the fact that the sample was only representative of two cities and non-Asian women, possible recall and selection bias, and that as a cross-sectional survey cannot address causality.
The study was supported by the National Cancer Institute. The authors reported no disclosures.
Primary source: Health Services Research Source reference: Hawley ST, et al "Racial/ethnic disparities in knowledge about risks and benefits of breast cancer treatment: does it matter where you go?" Health Serv Res 2008; 43: 1366-1387.
What breastcancer.org says about this article…
Patients Found to Lack Knowledge about Breast Cancer Treatment
The study reviewed here found that half of more than 1,100 women diagnosed with early-stage breast cancer didn't understand how lumpectomy followed by radiation therapy compared to mastectomy in:
- lowering the risk of the cancer coming back
- the risk of dying from the cancer
The researchers also found that African American and Hispanic women were less likely than white women to understand how the two types of surgery compared. Women whose doctors didn't discuss both surgical options were much less likely to know how the two surgeries compared. This lack of understanding was seen no matter which type of surgeon provided care (general surgeon or breast cancer surgeon) or where care was given (community hospital or large cancer center).
Women diagnosed with early-stage breast cancer may choose to have a mastectomy instead of lumpectomy and radiation because they think removing the whole breast makes it less likely that the cancer will come back. But research has shown that small, early-stage breast cancers (only one tumor that is smaller than 4 to 5 centimeters) removed by lumpectomy followed by radiation therapy have the same risk of coming back within 5 years as small, early-stage cancers removed by mastectomy.
This study suggests that many women make choices about breast cancer surgery without really understanding the differences between the two types of surgery. This might be part of the reason why more women have mastectomy than lumpectomy and radiation therapy in some parts of the United States.
When you and your doctor are deciding on the best breast cancer treatment plan for you, you may want to ask your doctor the following questions:
- What are ALL of my options, both medical and surgical?
- How do the options compare in their:
- ability to treat breast cancer?
- ability to reduce the risk of the cancer coming back?
- short-term and long-term risks and complications?
- affect on my quality of life?
- How does each option affect my future choices (breast reconstruction or getting pregnant)?
So you can remember and review what you and your doctor talk about, you might want to take notes while you're talking to your doctor. You also might want to bring a friend to help listen and take notes for you. You also can ask your doctor if you can record the discussion.
Talk to your doctor about how and why your treatment plan was developed. You also might consider getting a second opinion to see if the treatment plan you've been given is recommended by the second doctor.
Making the most informed decisions about your treatment is a responsibility both you and your doctor share. Ask as many questions as you need to until you're comfortable with your choices. There's only one of YOU and you deserve the best care possible.