Women face big decisions soon after being hit with a cancer diagnosis, including whether to have a breast-conserving lumpectomy or mastectomy.
With a five-year, $1.2 million grant from the National Institutes of Health’s Agency for Healthcare Research and Quality, UW Carbone Cancer Center breast surgeon Heather Neuman, MD, MS, FACS, will study ways to improve the decision process for patients, with a focus on women from disadvantaged parts of the country, both rural and urban.
“This conversation between surgeons and patients has always been hard, so I wanted to see if there was anything we could do to help patients come to their surgical consult appointment better prepared to be involved in the decision process,” Neuman said.
With funding from UW Carbone, Neuman recently conducted a pilot study in which breast cancer patients were given a “decision aid” after their diagnosis but before their appointment with a surgeon. The online aid presents information about the surgical options at a middle-school reading level and shows data side-by-side so it is easier to make comparisons. It also includes video clips of previous patients discussing why they made the choice they did.
“I noticed pretty quickly that patients who had the decision aids were more involved, they were more willing to tell me what they thought and they were more willing to ask for clarifications of things they didn’t understand, compared to those who did not have the aid,” Neuman said.
Based on those results, Neuman applied for the Agency for Healthcare Research and Quality funding with two main differences in mind. First, the study is expanding to 10 clinics nationwide that primarily serve lower-income patients, including Marshfield Clinic which serves rural patients. Second, the visits will be recorded to more accurately assess how engaged patients are with the decision. The study will compare patient engagement in the decision process before and after the clinic offers the decision aid.
“We’ll be measuring how many times the patient does something active, such as state their preference or ask for a clarification,” Neuman said. “We’ll also be looking for different places where barriers can happen, such as if a surgeon makes a recommendation early in the consult or if patients have limited access to the aid because it is online, so that we can develop interventions to reduce these barriers."
One of the biggest benefits Neuman sees to the use of these decision aids is that the surgeons do not have to change anything about how they consult with the patient, and the decision will still be made between the patient and surgeon.
“The aid is entirely patient-facing, and purely for the patients to get out of it what they want,” Neuman said. “Many surgeons are pretty quick to offer their recommendation, and this tool will at least empower patients to speak up about what is important to them when making this important decision.”