Patient Advocacy Groups and Caretaker Diversity in Metastatic Breast Cancer Research

Engagement from patient communities and the heterogenous nature of breast cancer made for ample research opportunity, according to Stephanie Graff, M.D., FACP, FASCO, director of breast oncology at the Lifespan Cancer Institute and author of Investigating the Salience of Clinical Meaningfulness and Clinically Meaningful Outcomes in Metastatic Breast Cancer Care Delivery.

“Although breast cancer certainly does and can affect men, it is largely a disease of women, and I think that the communication patterns of women are just different,” Graff said. “As a result, the caregivers of patients living with metastatic breast cancer are a very diverse group. Some of our caregivers were sisters, mothers, daughters and some of our caregivers were husbands.”

In Graff’s study on clinical meaningfulness, 115 individuals participated in at least one of 22 focus groups. Participants included patients with metastatic breast cancer, informal caregivers, oncologists and oncology nurses. Participants in all groups described clinical meaningfulness as the patient’s ability to complete life goals and maintain a desirable quality of life.