title: 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.
authors.affiliation: Breast Unit, Champalimaud Clinical Centre, Av. de Brasília, s/n, 1400-038 Lisbon, Portugal. Electronic address: fatimacardoso@fundacaochampalimaud.pt.
authors.forename: Fatima
authors.initials: F
authors.lastname: Cardoso
authors.affiliation: Brustzentrum der Universität München, Maistrasse-Innenstadt und Großhadern, Marchioninistr. 15, 81377 München, Germany. Electronic address: Nadia.Harbeck@med.uni-muenchen.de.
authors.forename: Nadia
authors.initials: N
authors.lastname: Harbeck
authors.affiliation: Metastatic Breast Cancer Network, New York, NY, USA. Electronic address: shirley.a.mertz@gmail.com.
authors.forename: Shirley
authors.initials: S
authors.lastname: Mertz
authors.affiliation: Breast Care Support Group, Europa Donna Malta, Mtarfa, Malta. Electronic address: doris.fenech@gmail.com.
authors.forename: Doris
authors.initials: D
authors.lastname: Fenech
mesh_terms: D001007:Anxiety / Q000209:etiology*; D001943:Breast Neoplasms / Q000150:complications / Q000523:psychology* / Q000628:therapy; D003863:Depression / Q000209:etiology; D004651:Employment; D005260:Female; D006801:Humans; D007182:Income; D057226:Information Seeking Behavior; D007398:Interpersonal Relations; D020380:Needs Assessment; D012934:Social Isolation; D011795:Surveys and Questionnaires
keywords: Advanced breast cancer; Emotional need; Information need; Metastatic breast cancer; Psychosocial need; Survey