According to published reports from the Institute of Medicine and the New England Journal of Medicine, roughly one-third of early-stage breast cancer patients undergo mastectomy even though breast conservation surgery with radiation therapy results in equal survival rates.
The findings, said Sheryl Mendlinger, an administrative manager at the Institute on Urban Health Research in the Bouvé College of Health Sciences at Northeastern University, suggest that patients lack knowledge or don’t adequately participate in the decision-making process.
Her new report — published in the January edition of The Breast Journal and co-authored by researchers at Harvard Medical School, Brigham and Women’s Hospital and the Dana-Farber Cancer Institute — outlines a model of knowledge acquisition in newly diagnosed breast cancer patients.
The report grew out of Mendlinger’s doctoral dissertation on how young women acquire knowledge about menstruation.
“The goal is to gain a better understanding of the process that women go through when they are faced with breast cancer and have to deal with the shocking news and make important decisions in a relatively short period of time,” Mendlinger explained. “We really want to understand why more women would not choose a less radical surgery that is easier to recover from and has the same survival rate.”
As the co-authors put it in the report, “In order for a patient to adequately participate in the decision-making process, she must acquire new knowledge.”
The paper highlights four types of knowledge acquisition: authoritative, technical, embodied and traditional.
Authoritative knowledge, Mendlinger said, is that which is provided by figures of authority, such as breast surgeons and medical oncologists. Technical knowledge, which is also acquired from health-care specialists, refers to an understanding of both clinical procedures and the health-care system. Embodied knowledge is gathered from observing friends, relatives or peers who have gone through similar experiences. Traditional knowledge is that which is transmitted between generations through rituals and history.
Mendlinger, a two-time breast cancer survivor, has relied on authoritative, technical and embodied knowledge to make her decisions.
The model’s effectiveness, she noted, is not limited to breast cancer patients. “It could help anyone faced with any kind of health issue,” Mendlinger explained.
She and her colleagues at Harvard Medical School and the Brigham are preparing to apply for a grant from National Institutes of Health to study how early-stage breast cancer patients make their decisions.
“One of the important goals is to find out what role health-care providers play in the process and to develop education tools or materials for doctors and patients,” Mendlinger said.