Evolving psychosocial, emotional, functional, and support needs of women with advanced breast cancer: Results from the Count Us, Know Us, Join Us and Here & Now surveys

Abstract

Although medical advances have marginally improved survival of women with advanced breast cancer, their psychosocial, emotional, and functional needs remain unmet. Two surveys, Count Us, Know Us, Join Us (Count Us) and Here & Now (H&N), were conducted to understand the unique challenges faced by women with advanced breast cancer and to identify ways of addressing these issues. A total of 1577 women with advanced breast cancer (Count Us, N = 1273; H&N, N = 304) participated in the two surveys, which revealed several previously unreported challenges. Nearly half the women felt isolated and worried, and slightly more than half experienced declines in income because of change in employment; 41% of women felt that support from family and friends decreased over time, and many patients believed information about advanced breast cancer was inadequate and difficult to find. Concerted efforts by people who care for and support women with advanced breast cancer are urgently needed to address these issues.

Keywords: Advanced breast cancer; Emotional need; Information need; Metastatic breast cancer; Psychosocial need; Survey.