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15-01-2012 | Surgery | Article

Breast cancer survivors lack knowledge about treatment

Abstract

Free abstract

MedWire News: Many breast cancer survivors lack knowledge about local recurrence and mortality risks associated with breast-conserving surgery (BCS) and mastectomy, results of a US survey show.

Around half of patients were not asked by their provider about their treatment preference, and those preferring mastectomy were less likely than those preferring BCS to have treatment that was concordant with their wishes, report Clara Lee (University of North Carolina, Chapel Hill, USA) and colleagues.

This indicates that "improvements in the quality of decisions about breast cancer surgery are needed," they write in the Journal of the American College of Surgeons.

The researchers surveyed 440 stage I/II breast cancer survivors, who were diagnosed 1-3 years before contact, about demographics, clinical history, preferred treatment, and perception of being informed. They also used the Decision Quality Instrument, which measured knowledge, goals, and involvement in decisions.

The mean overall knowledge score was 52.7%. Just under half (45.9%) of the participants knew that local recurrence risk is higher after BCS than after mastectomy. The remaining participants answered "there is no difference" (28.2%) or "I am not sure" (24.5%).

Of note, participants who had partial mastectomy were less likely than those who had full mastectomy to answer this question correctly.

This finding is "concerning" because "patients who opt for partial mastectomy need to be aware of their slightly higher risk of local recurrence," say Lee et al.

Just over half (55.7%) of the participants knew that mastectomy and partial BCS with radiation result in equivalent survival, while 29.3% said they were not sure. Participants who had undergone BCS were more likely to answer this question correctly than those who had undergone mastectomy.

Multivariable logistic modeling showed that most (89.0%) participants had treatment concordant with the goals and concerns they reported in the initial questionnaire. These goals included "keeping your breast," removing the entire breast for "peace of mind," avoiding recurrence in the treated breast, and avoiding radiation.

However, participants preferring mastectomy had significantly lower concordance (80.5%) than those preferring BCS (92.6%).

In addition, participants reported more frequent discussion of BCS and its advantages than of mastectomy (90.0 vs 68.0%), and fewer than half (48.6%) said that their provider asked their treatment preference.

The researchers recognized that the retrospective design of the study may be a limitation. "Participants might have forgotten information, so knowledge at the time of decisions might have been higher than what we measured," they write.

In an invited commentary Ted James (Vermont Cancer Center, Burlington, USA), says that despite its limitations, "the study uncovers potential gaps and deficiencies in the process of informing patients about their options for breast cancer surgery and actively engaging them in the decision process."

He adds: "This information can guide us in removing barriers to patient-centered care and help us to implement systems that empower patients and allow us to partner with them in their care decisions. These include systems that help patients understand competing risks and benefits of treatment options, enable them to clearly convey their treatment preferences and priorities, and determine their desired level of involvement in decision-making."

By Laura Cowen

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