Abstract P1-11-06: The experience of caregivers of women with metastatic breast cancer: Insights from the Make Your Dialogue Count survey
Authors: Mayer M , Sampayo I , Bell Dickson R , Citron ML , Brufsky AM 
Published: May 2016

Introduction: Caregivers of patients with breast cancer have demonstrated persistent unmet needs, including reduced physical and psychosocial well-being. This may be particularly acute in caregivers of patients with metastatic breast cancer (MBC), whose ongoing treatments and increasing disability with disease progression offer particular challenges. While prevalence of MBC is currently unknown, caregivers of women with MBC represent a sizable group.

Objective: To explore the emotional, psychological, and social impact on caregivers of patients with MBC and to identify gaps in communications between patients and their caregivers and oncologists.

Methods: The "Make Your Dialogue Count" survey was conducted online, by paper, and by telephone (June-August 2014) among caregivers in the United States (age ≥18 y) who attended ≥50% of doctor visits of women with MBC (age ≥21 y). Survey responses were single- or multiple-response, numeric text, or rated on a 4-point Likert scale. Caregiver data were unweighted and representative only of those responding. Statistically significant differences between groups were determined by standard t-test of column proportions and means at the 95% confidence level.

Results: 234 caregivers responded; 73% were men, 44% were the patient's spouse/partner, and 27% were nonwhite. Median age was 44 y. The caregivers' loved ones had a median time from initial breast cancer diagnosis of 44 months prior, and 51% had recurred after early breast cancer. Most caregivers (76%) considered themselves to be extremely or very involved in treatment decisions, but a sizable fraction of caregivers were unaware of the HR (20%) or HER2 (29%) status of the patient's cancer, indicating a lack of basic information needed for informed decision-making. While most (93%) said they felt comfortable speaking with the treatment team about MBC treatment, 41% reported communication barriers. Over half of caregivers (53%) felt that nobody understands what they're going through, and most (86%) reported that their lives had been negatively affected in some way (such as sleep habits, relationships and social life, hobbies and personal time, and financial stability and employment). Most caregivers considered caregiving to be an emotional (77%) and physical (56%) burden and 36% felt unappreciated. At the time of initial MBC diagnosis, 69% of caregivers felt it was important/very important for their loved one's doctor to refer them to support services, but only 25% of caregivers reported receiving such a referral. Subgroup analysis of caregiver's gender revealed some differences in responses relating to communications with oncologists, treatment experience, and emotional impact.

Conclusions: While committed to their roles, these caregivers often found their role to be a physical and emotional burden, and many reported feeling isolated and unappreciated for their caregiving. Our findings indicate a strong need for support services specifically tailored to caregivers, including outreach to address emotional, financial, and practical needs stemming from caring for a loved one with MBC. They also indicate a need for improved disease and treatment information exchange between caregivers, patients, and healthcare providers.

Citation Format: Mayer M, Sampayo I, Bell Dickson R, Citron ML, Brufsky AM. The experience of caregivers of women with metastatic breast cancer: Insights from the Make Your Dialogue Count survey. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P1-11-06.