Patient-reported outcomes (PROs) can improve patient satisfaction and potentially impact survival. However, PRO data are not well-collected outside of the research setting. Researchers at the Yale School of Medicine in New Haven, CT, conducting qualitative study assessed the most personally relevant PROs in women with metastatic breast cancer and observed substantial variation in patient preferences. They presented the findings at the San Antonio Breast Cancer Symposium on December 7, 2018.

The investigators conducted individual interviews with patients who started treatment for metastatic disease within the previous six weeks at the Breast Center at Smilow Cancer Hospital of Yale New Haven Hospital. Patients received a list of six PRO domains: physical well-being, emotional well-being, treatment burden, functional status, financial concerns, and social well-being. Patients ranked items in each domain using a card sorting exercise where the number of items ranged from five to 15. They were then asked where and how often they preferred to report PROs.

Ten women with metastatic breast cancer (mean age = 58 years) completed the card sorting exercise. Researchers observed no commonality in any of the rankings. Five women reported physical well-being as the most important domain, and treatment burden and emotional well-being also ranked high. Participants preferred reporting PROs in the waiting room for all domains except emotional well-being, for which home was the preferred reporting setting. Participants said they were willing to complete PRO assessment in the waiting room for about 10 minutes and at home for 20 minutes.

The researchers noted that physical symptoms were not the top concern for half of the patients, despite previous PRO studies focusing on domains such as symptoms and adverse events.

“Our findings support the development of multidimensional tools for the collection of PROs,” the researchers concluded. “Although toxicity and physical symptoms are of utmost concern, clinicians should not neglect other dimensions of quality of life in women with metastatic breast cancer.”