A team of stakeholders has detailed research priorities necessary to address gaps in knowledge about early breast tumors in women. They prioritized addressing concerns that the diagnosis is often not clear-cut, and that typical treatments come with a trade-off of benefits and serious side effects.

Collaborating with clinical experts, patients, patient advocates, and other stakeholders, the team from Duke Clinical Research Institute in Durham, North Carolina, worked to identify and rank the important gaps in knowledge that should be the focus of new research.

The article stated that ductal carcinoma in situ (DCIS) is the most common finding in women having mammography screening. With DCIS, which are tiny breast lesions detected via mammography, considerable uncertainty has evolved over whether to treat the condition as cancer. Many of the lesions never progress to life-threatening invasive cancer, while treatment plans call for mastectomy, lumpectomy, and radiation.

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“We don’t have a good handle on how to distinguish between the cases that will develop into invasive cancers, and those that are harmless,” said lead author Jennifer Gierisch, PhD, assistant professor of medicine in the Division of General Internal Medicine at Duke. “There is a lot of uncertainty about what a diagnosis means and how to proceed around a diagnosis. Our goal is to identify research priorities to address these questions and reduce the uncertainty for both patients and doctors.”

The article was published in Annals of Internal Medicine (2014; doi:10.7326/M13-2548), along with another one that addressed similar questions regarding bipolar disorder in adolescents.

The evidence gaps prioritized were related to the incorporating of patient-centered outcomes in future research, developing better methods to predict risk for invasive cancer, evaluating a strategy of active surveillance, and testing decision-making tools. The panel involved in setting the research priorities stated that, “The overarching theme…is that uncertainty about the long-term implications of a diagnosis of DCIS is the major factor affecting the ability of patients to make decisions about management of options that reflect their preference.”

The top priority was to generate estimates of the long-term risk for a given patient whose DCIS progresses to life-threatening cancer, and the second priority was developing better strategies to help patients cope with the current uncertainty of a DCIS diagnosis. Patient advocates were described as vocal about the ongoing distress from uncertainty that occurs both before and after treatment.