A national survey of support and information needs of Australian women living with advanced breast cancer.

Abstract

9124 Background: Improved treatments mean women with advanced breast cancer (ABC) are living longer, sometimes for many years. As a result, these women may experience chronic needs that are different from those with early breast cancer. We aimed to assess the support and information needs of women living with ABC. Methods: A national postal survey was sent to 2,345 women with ABC registered as members of the consumer organizations BCNA and/or BreaCan. Women were asked about their disease, treatment, experiences of care, and to complete the Supportive Care Needs Survey. Results: The response rate was 34% (792 valid responses). Mean age was 57 (range 25-99) with 21% living alone and 27% working. 18% reported living with ABC for >7 years. 656 (85%) were having current treatment: chemotherapy (43%), hormonal therapy (46%), bisphosphonates (49%), and/or trastuzumab (Herceptin) (19%) respectively. 49% of women reported having access to a Breast Care Nurse (BCN) since diagnosis of ABC but only 3% cited a BCN or cancer nurse as their main contact. The majority (76%) cited their medical oncologist as their main contact, 8% cited their family doctor. Women wanted information about: treatment options (84.2%), new treatments (79.2%), symptoms/side effects (78.9%), clinical trials (60.8%), managing pain (57.2%) and financial assistance (38%). Women ≤ 65 had significantly higher levels of unmet needs than those >65 for the 7 items below, including all items from the sexual domain. Conclusions: Women with ABC have many unmet needs with younger women particularly needing more support with sexual needs and anxiety. Women are heavily reliant on their medical oncologist, who may not be equipped or best placed to meet these needs. Models of care need to be developed to address the unmet supportive care needs of women living with ABC. [Table: see text]

Informational needs and the quality of life of patients in their first year after metastatic breast cancer diagnosis

“…Our results are consistent with the literature, with information about treatments and disease being highly impor- tant to patients. 15,21 Mayer and colleagues administered 2 questionnaires to patients with MBC: an online needs assessment of 618 patients, and a global survey of 1,342 patients living in 13 countries. In addition to having high informational needs about treatment and disease, 73% of patients who completed the online needs assessment reported seeking information daily or weekly, and 76% of patients in the global survey reported that they took an active role in searching for more information on MBC.…”

“…10,11 Many patients with advanced cancer want prognostic information and to understand what to expect from their disease and the treatments. [12][13][14][15][16] As such, physicians should consider the amount and the type of information their patients prefer to receive in order to meet their needs. Although there is some literature on the informational needs of breast cancer patients, [17][18][19][20][21] there is limited specifc information for patients with MBC.…”