Abstract P6-12-05: Metastatic breast cancer collateral damage project (MBCCD): Development and preliminary results of the survey of health, impact, needs, and experiences (SHINE)
Authors: Stanton A , Williamson T , Clague DeHart J , Jorge A , Eshraghi L , Cooper Ortner H , Love S 
Published: February 2018

Abstract
Rationale: People living with metastatic breast cancer face unique challenges, which have not been well characterized. The aim of the MBCCD was to characterize the MBC patient experience in order to identify and address potential areas of need in this underserved population.
Method: We crowdsourced input and gathered free-text data from 353 people living with MBC to document the breadth of challenges affecting quality of life. From the responses, we developed a new measure (SHINE) with 79 patient-driven items regarding the experience of MBC, including verbatim statements from crowdsourcing data. Validated quality of life scales, clinical information, and demographic data were also collected. Participants were recruited from Dr. Susan Love Research Foundation's Army of Women® and other advocacy organizations; 515 completed the questionnaire. Confirmatory and exploratory factor analyses were conducted to assess model fit for SHINE and to identify subscales. Next, differences in MBC-specific concerns and experiences as a function of age, marital status, financial status, education, children, metastatic site location(s), and current medical treatment were examined with ANOVAs and t-tests.
Results: Factor analyses indicated good model fit (CFI=.96, RMSEA=.05, SRMR=.04) for a 36-item scale of MBC-specific concerns and experiences with nine subscales: 1) Employment/achievement, 2) Finances, 3) Insurance, 4) Mortality/uncertainty, 5) Activity disruption, 6) Concern for others, 7) Social isolation/withdrawal, 8) Self-concept disruption, 9) Benefit finding. A within-subjects ANOVA revealed that participants were most bothered by mortality/uncertainty concerns, followed by activity disruption, financial, employment/achievement, and insurance concerns, respectively (F(4,508)=111.38, p&lt;0.01). Additionally, participants endorsed strongest agreement with benefit finding, followed by concern for others, self-concept disruption, and social isolation/withdrawal (F(4,508)=101.53, p&lt;.01). Participants younger than 50 years and those with lower financial status reported higher concerns on all subscales (ps&lt;0.01), except for benefit finding (ps&gt;0.18). Participants with a child under 18 living at home, those on combination therapies, and those with metastases to multiple sites or bone only reported higher concerns on several subscales (ps&lt;0.05). Being married was significantly associated with higher concern for others and lower concern about finances (ps&lt;0.02). Education was not significantly related to any subscale.
Conclusions: Several important concerns and experiences related to MBC are not captured adequately in existing measures. This study developed a new measure (SHINE), which reliably assessed these disease-specific concerns and experiences in 515 adults living with MBC. Concerns regarding mortality and uncertainty were most prominent. Specific demographic and medical characteristics modified responses on eight subscales, but not on the benefit finding subscale. Findings can aid the development of supportive care efforts that address areas of need (e.g., concerns about mortality and uncertainty) in this understudied medical population.
Citation Format: Stanton A, Williamson T, Clague DeHart J, Jorge A, Eshraghi L, Cooper Ortner H, Love S. Metastatic breast cancer collateral damage project (MBCCD): Development and preliminary results of the survey of health, impact, needs, and experiences (SHINE) [abstract]. In: Proceedings of the 2017 San Antonio Breast Cancer Symposium; 2017 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2018;78(4 Suppl):Abstract nr P6-12-05.