PCORI-Funded Research Seeks Answers for Breast Cancer Patients and Their Families

October is National Breast Cancer Awareness Month—an appropriate time to describe PCORI’s growing portfolio of research designed to answer the questions most important to patients weighing the various treatment options available to them when diagnosed with this disease.

Every year, more than 200,000 patients learn that they have breast cancer, a diagnosis that often triggers a series of difficult and deeply personal decisions that they must make in conjunction with their families and clinicians. Available treatment—including surgery, radiation, and chemotherapy—can pose a significant burden for patients and their families. Patients must weigh the discomfort, pain, disfiguration, and other risks that may result from breast cancer therapy against increased survival and extended periods free of the disease. Those decisions are all the more difficult without high-quality evidence about the outcomes a patient can expect from each option.

As the second-most-common malignancy in women, breast cancer fits squarely within PCORI’s criteria for high-priority, high-impact health care issues. And because treatment decisions often are strongly influenced by patient preferences, PCORI’s patient-centered approach to research is particularly well-suited to producing relevant and usable information for patients and those who care for them.

As part of our effort to provide such evidence, we have so far funded five studies designed to produce results that will help patients and those who care for them make better-informed clinical choices and receive worthwhile support. The process of selecting those projects, and of considering additional studies to fund in the future, is informed by input from patients and survivors, their caregivers, advocates, and clinicians who are part of our merit review process and advisory panels.

A Decision About Surgery

A recently funded study, by the University of Texas MD Anderson Cancer Center, examines one such difficult choice: whether women with breast cancer should have both breasts removed—the one with the cancer plus the other one—to avoid currently undetected cancers. The frequency with which this surgery is performed has increased dramatically in recent years, although there is little evidence regarding whether it improves patient medical outcomes or sense of wellness.

In the PCORI-funded work, researchers will assess how this surgery affects life expectancy. They also will examine the psychosocial outcomes of women who choose to have both breasts removed and how characteristics of the women (e.g., age, ethnicity, education) and those of the physician (age, gender) influence their outcomes.

What To Do to Prevent Recurrence

We also have much to learn about preventing and detecting recurrence of breast cancer. With advances in detection and treatment, we know that more than 90 percent of patients will survive the first five years after diagnosis. But as many as one in five breast cancer survivors will face the disease again within 10 years of treatment. So, in a PCORI-funded project at Group Health Cooperative in Seattle, Washington, researchers are studying whether mammography or magnetic resonance imaging (MRI) is more effective in finding recurrences of breast cancer. The project will also develop patient-decision aids to help women and their doctors choose a surveillance method.

Another PCORI-funded project seeks to develop a new strategy for surveillance after breast cancer treatment. Researchers at The Alliance for Clinical Trials in Oncology Foundation in Chicago, Illinois, will analyze data from a variety of sources and engage cancer survivors and others to develop guidelines for post-treatment care that considers individual risk factors and is more patient-centered and effective than the existing one-size-fits-all approach.

PCORI also funds research to provide better information to women with pre-invasive breast cancer, also known as ductal carcinoma in situ (DCIS). If left untreated, DCIS can progress to invasive breast cancer. Treatment options include mastectomy or more conservative breast-conserving surgery, with some women undergoing radiation therapy, while others choose not to. The challenge for making an informed choice is that there’s no evidence-based optimal treatment strategy. At the Dana-Farber Cancer Institute in Boston, Massachusetts, researchers are analyzing four large data sets to document the outcomes of the major treatment options—breast-conserving surgery with and without radiation—taking into account patients’ individual characteristics. The team also plans to design a Web-based decision aid to help patients and their physicians choose a treatment in accordance with patient preferences.

Support for Patients and Caregivers

Another PCORI-funded project, based at Georgetown University in Washington, DC, tests a method for providing emotional support to Latina breast cancer survivors and their caregivers. Latinas are among the minority populations in which outcomes from breast cancer are poorer than average. Specifically, Latina breast cancer survivors tend to experience a lower quality of life than non-Latina survivors.

This study will assess a community-based intervention developed by survivors themselves. In the intervention, breast cancer survivors and their caregivers separately attend group sessions to discuss different topics including communication, stress management, treatment side effects, and the impact of cancer on the family. After the sessions, survivors and caregivers come together to share what they discussed. If the intervention proves effective in improving quality of life among Latina cancer survivors, it can be implemented in communities across the country to support tens of thousands of Latino families facing cancer.

As we continue to fund research answers questions important to patients across the country, we will certainly add more studies related to breast cancer. At its meeting last month, PCORI’s Advisory Panel on Assessment of Prevention, Diagnosis, and Treatment Options discussed the need for more comparative effectiveness research on management strategies for DCIS. Fortunately, there is an active community of breast cancer patients, and as a next step, we are engaging patients and patient advocacy groups to advise us on potential research studies we can fund to answer their questions about DCIS.

If you have encountered a question regarding breast cancer, or any other disease, for which there is insufficient information, please submit your question to PCORI so it can be considered for future rounds of funding. Thank you for your support and your commitment to providing patients and families fighting breast cancer with the information they deserve.