Susan Love Research Foundation Research Articles

Accuracy of self-reported cancer treatment data in young breast cancer survivors

BackgroundPatient-reports of cancer treatments are sometimes used in oncology research and clinically when medical records are unavailable. We aimed to evaluate the accuracy of patient recall in this setting.Materials and methodsParticipants were recruited through an email request from the Dr. Susan Love Research Foundation Army of Women seeking women diagnosed with breast cancer under age 50 and within the past ten years, self-reporting to have been treated with chemotherapy. After informed consent, participants received a web-based survey that inquired about use of and type of chemotherapy and endocrine therapy received. Medical records were reviewed, and discrepancies were defined as patient-report of a different class of drug than documented in the medical record, failing to report a documented class of drug, or responding “don’t know.”ResultsOf 171 eligible participants, completed questionnaires and medical records were available for 102 (60%). Median age at diagnosis was 41 years (range 25–49), and median time from diagnosis was 65.5 months (range 7–131). Ninety-two percent had completed college. Receipt of chemotherapy was documented in the medical records of 100% of these women who self-reported a personal history of chemotherapy, and there was also 98% concordance regarding receipt of endocrine therapy (yes vs. no). However, discrepancies were identified in 29% of patients regarding chemotherapy types. Time since diagnosis did not increase the likelihood of discrepancies.ConclusionHighly educated young women diagnosed with breast cancer more than five years prior accurately report whether or not they received broad systemic treatment categories. However, self-reports regarding specific drugs should be confirmed by medical record review.

Differences in Family Health History Knowledge Among Bisexual and Lesbian Women.

We aimed to determine whether there are differences between sexual minority women and heterosexual women in family health history knowledge. We used data from Dr. Susan Love Research Foundation's The Health of Women Study®. We included women who completed two of six online surveys between 2012 and 2015 (n = 22,410). Compared with heterosexual women, bisexual and lesbian women had consistently greater odds of not knowing their family health history (e.g., odds ratios of 2.59 and 1.56 for breast cancer, respectively). To avoid exacerbating existing health disparities, in the era of precision medicine, we must address gaps in knowledge of family health history.

Abstract P6-15-02: Study result dissemination preferences of research participants in the Army of Women® program

Abstract Background: The Army of Women (AOW) is a breast cancer research program of Dr. Susan Love Research Foundation (DSLRF). This initiative aims to accelerate breast cancer (BC) research by engaging and connecting the public with clinical research. To date, over 382,000 women and men, with and without BC, have registered as members. AOW members have full access to a curated repository of supported research studies and educational resources about the science of BC and the clinical research process. This highly motivated, proactive membership has donated their time, biological samples, and health data to advance studies over the last 10 years. Previous literature has demonstrated that research volunteers are less likely to participate in future studies if not informed of study results. With a membership that has volunteered to participate in over 130 studies, we sought to examine members' interest in receiving study results and preferred dissemination methods. Methods: An adaptive, anonymous, online survey collected data on demographics, motivations, engagement behaviors, and attitudes toward research. Participants (N=1,486 to date) were recruited via email (AOW members only) and social media (AOW members and non-members; Facebook posts and ads). Responses were analyzed to understand participant preferences in study result dissemination and outreach methods. For these analyses, the cohort was limited to AOW members who completed the survey and reported past participation in AOW-supported studies. Results: Of the 1,486 respondents, 527 (mean age 62.7 years, range 30-85) indicated AOW membership and reported past participation in AOW-supported studies. The majority was female (99%) and non-Hispanic white (94%). Over half (65.46%) reported a history of BC. Of participants, 71% would like to learn about scientific results from studies that included members of the AOW. The preferred dissemination frequency and methods are monthly via email (61%) or social media (26%). Based on participants' reported social media use, dissemination through Facebook (74%) would yield the greatest reach – followed by YouTube (24%), Instagram (22%), LinkedIn (15%), Twitter (14%), and Snapchat (4%). In addition to updates about study results, 75% of participants want to hear about publications from past AOW-supported studies. Importantly, a majority (84%) of those also want access to a brief overview and lay explanation of the publication. The preferred methods of dissemination for these publications and lay overviews are AOW newsletters (84%), a dedicated menu on the AOW website (51%), social media (29%), and blog posts on the DSLRF website (16%). Conclusions: As in prior literature, clinical research participants in the AOW program indicate a high preference for receiving updates and staying informed about past study results. Participants indicate that they prefer to receive these results through emailed newsletters, websites, and social media. Researchers should consider these low-cost methods as they plan for result dissemination. Our findings support that volunteers want to be informed about results of their participation. This provides a clear opportunity for researchers to keep volunteers engaged and interested in participating in future clinical research. Citation Format: Laurita N, Roudebush L, Eshraghi L, Love S. Study result dissemination preferences of research participants in the Army of Women® program [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P6-15-02.

Abstract P2-14-04: Genetic testing and bilateral mastectomy for women with breast cancer: Does testing matter more than the test result?

Abstract Background: Genetic testing for hereditary breast cancer may allow women with breast cancer to make informed and individualized decisions regarding breast cancer treatment and strategies to reduce the risk of contralateral breast cancer. While rates of bilateral mastectomy (therapeutic mastectomy + contralateral prophylactic mastectomy) among women with unilateral breast cancers are known to be increasing, the factors influencing this decision and the role of genetic testing are poorly understood. We examined bilateral mastectomy rates and factors associated with bilateral mastectomy among women with unilateral breast cancer. Methods: We identified patients diagnosed with unilateral breast cancer from 2000-2015 from The Health of Women Study, a cohort study led by the Dr. Susan Love Research Foundation. We calculated rates of bilateral mastectomy among women who underwent surgical treatment for breast cancer. We used multivariable logistic regression models to evaluate factors associated with bilateral mastectomy. Results: Among 2,028 patients who underwent surgery for unilateral breast cancer, 19% underwent bilateral mastectomy. Forty-one percent (n= 84 of 205) of patients who underwent testing and tested positive for a deleterious mutation underwent bilateral mastectomy, compared to 26% (n= 439 of 1,689) of women who tested negative and 12.5% (n= 274 of 2,197) of those not tested. Among those with a negative genetic test, pre-test risk of harboring a genetic mutation (based on family history and age at diagnosis) was not associated with bilateral mastectomy (p=0.250). After adjusting for race, age, level of education, and pre-test mutation risk, the odds of bilateral mastectomy were 69% higher among patients who underwent genetic testing (OR 1.69, 95% CI 1.29–2.22, p<0.001) versus those who did not undergo genetic testing. This finding was consistent regardless of genetic test result. Multivariable analysis of factors associated with bilateral mastectomy Odds ratio95% Confidence Intervalp valueRisk Category Low riskReference--Moderate risk1.470.96 – 2.420.078High risk1.460.92 – 2.320.111 Genetic testing1.691.29 – 2.22<0.001 Genetic test result Not testedReference--Positive test2.711.66 – 4.46<0.001Negative test1.561.18 – 2.070.002*Adjusted for age, race, and level of education. Conclusions: Genetic testing among breast cancer patients, regardless of test result or pre-test mutation risk, is significantly associated with bilateral mastectomy. Many women (˜1/4) with a negative genetic test and at low risk of hereditary breast cancer, by family history and age at diagnosis, currently undergo bilateral mastectomy with unclear benefits. Further qualitative research will aim to elucidate reasons driving choice of bilateral mastectomy among women with breast cancer. Citation Format: Verdial FC, Bartek MA, Anderson BO, Javid SH. Genetic testing and bilateral mastectomy for women with breast cancer: Does testing matter more than the test result? [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P2-14-04.

Abstract P1-12-10: Regimen-specific rates of chemotherapy-related amenorrhea in breast cancer survivors

Abstract Background: Chemotherapy can damage the ovaries and cause amenorrhea, a surrogate for infertility. Young women often wish to understand and minimize their risk of chemotherapy-related amenorrhea (CRA). However, the incidence of CRA with regimens that do not include either an anthracycline or cyclophosphamide is poorly studied. For patients with HER-2 positive disease, these anthracycline and cyclophosphamide-sparing regimens (e.g., docetaxel-carboplatin) are common (in combination with Her-2 directed therapy) in both the neoadjuvant and adjuvant settings. Methods: Women diagnosed with breast cancer under age 50 and within the past 10 years were recruited through a Dr. Susan Love Research Foundation Army of Women e-mail blast. Those who provided their contact information were mailed a consent form and medical record authorization form. Participants then received a web-based survey that inquired about receipt of and type of chemotherapy (including date of last dose) and date of last menstrual period (LMP). Patient-reported LMP was compared to date of final chemotherapy dose to determine if the LMP occurred before (defined as “CRA”) or after the last chemotherapy dose. When available, medical record data was used in place of survey data regarding type of chemotherapy used. Exclusion criteria included: LMP prior to diagnosis date, receipt of multiple chemotherapy regimens or no chemotherapy regimens, receipt of ovarian suppression medications (which interfere with interpretation of menstrual data), surgical menopause prior to or at the same time as diagnosis, a cancer diagnosis more than 10 years prior, incomplete menstrual data on the survey, report of an unknown chemotherapy regimen, and no date available for the last chemotherapy dose without an LMP within a month prior to survey completion. Fisher Exact test was used to compare CRA rates between regimens. Rates after two anthracycline-sparing regimens (taxane/cyclophosphamide; taxane/carboplatin) were compared to rates after anthracycline/cyclophosphamide/taxane. Results: 273 women consented to participate in this study, 258 of whom filled out the web survey. 151 of them were eligible for this analysis with a median age at diagnosis of 41 (range 24-49) and a median time from last chemotherapy dose to survey of 62.5 months (range 2-138). CRA occurred in 51.2% of the 86 participants who received an anthracycline, cyclophosphamide, and a taxane, in 41.9% of the 43 participants who received only a taxane and cyclophosphamide (p=0.35), and in 13.3% of the 15 participants who received carboplatin with a taxane (p=0.01). When the 11 patients who were <12 months since last chemotherapy were excluded, CRA rates changed minimally. Age did not differ by regimen, but median time since chemotherapy was shorter in the taxane/carboplatin group (35 months vs. 68 months). Trastuzumab with or without pertuzumab was administered in 100% of patients who received carboplatin/taxane, in 23.3% of patients who received taxane and cyclophosphamide, and in 22.1% of patients who received anthracycline/cyclophosphamide/taxane. Conclusions: This study suggests that carboplatin/taxane may be substantially less gonadotoxic than cyclophosphamide-based (neo)adjuvant regimens. Further research is necessary to confirm these findings. Citation Format: Gast KC, Cathcart-Rake EJ, Norman A, Eshragi L, Obidegwu N, Yost K, Nichols HB, Rosenberg S, Su HI, Stewart E, Couch F, Vachon C, Ruddy KJ. Regimen-specific rates of chemotherapy-related amenorrhea in breast cancer survivors [abstract]. In: Proceedings of the 2018 San Antonio Breast Cancer Symposium; 2018 Dec 4-8; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2019;79(4 Suppl):Abstract nr P1-12-10.

Is it time to reconsider the term “cancer survivor”?

Purpose: To improve understanding of how people diagnosed with cancer perceive the term “cancer survivor” and what influences those perceptions.Design: Patients’ reactions to the term were surveyed quantitatively and qualitatively.Sample: Women who have primarily experienced breast cancer belonging to The Dr. Susan Love Research Foundation’s Army of Women.Methods: An online survey including fixed-alternative and open-ended questions.Conclusions: Using the blanket term “survivor” to label a diverse group is problematic; although the term offers a positive identity for some, others reject it or find it offensive, at least for patients like those represented in this study. If cancer patients are going to be labeled, they should choose the one that is most empowering and reflective of their experience.Implications for Psychosocial Providers: Language used in providing care or describing patients is controllable. If evidence exists that a particular term has the potential to inflict psychological harm, why use the term?

Concordance with BRCA1/2 testing guidelines among women in The Health of Women (HOW) Study®.

To evaluate factors associated with compliance to the National Comprehensive Cancer Network (NCCN) guidelines for BRCA1/2 testing and identify groups who are at risk of under- and over-use of BRCA1/2 testing. Data included 20,758 women from Dr. Susan Love Research Foundation's The Health of Women (HOW) Study®. Multinomial logistic regression was used to examine the association of socioeconomic and demographic characteristics with whether the woman was over-, under-, or appropriately tested for BRCA1/2 mutations, per 2015 NCCN guidelines. 3894 women (18.8%) reported BRCA1/2 testing. 5628 (27.1%) women who met NCCN criteria for testing were not tested. Among women with a history of breast cancer, those without health insurance were more likely to be under-tested (OR 2.04, 95% CI 1.15-3.60) than those with managed care insurance, and higher education was associated with a lower likelihood of under-testing (Graduate/professional degree OR 0.71, 95% CI 0.55-0.91). Almost 30% of women were under-tested, indicating that many high-risk women who may benefit from genetic testing are currently being missed. Without appropriate testing, providers are unable to tailor screening recommendations to those carrying mutations who are at highest risk. Patient and healthcare provider education and outreach targeted to low-income and under-served populations may assist in reducing under-testing.

Breaking bad news of a breast cancer diagnosis over the telephone: an emerging trend.

This study evaluated how breast cancer diagnoses were shared with patients. Current members of the Dr. Susan Love Research Foundation's Army of Women cohort were sent one email with a link to a survey assessing how their breast cancer diagnosis was communicated, a description of their support system during treatment, basic demographic information, and breast cancer diagnosis details. Participants (n = 2896) were more likely to be given their diagnosis over the telephone in more recent years (OR 1.07, 95% CI 1.06-1.08). Up until about 10years ago (1967-2006), breast cancer diagnoses were communicated in person more often than by telephone. Since 2006, more than half of participants learned about their diagnosis over the telephone. From 2015 to 2017, almost 60% of participants learned about their diagnosis over the telephone. Among those who heard the news in person, a steady 40% were alone. Characteristics of those who received the news over the telephone included having identified support members, heterosexual identity, and a diagnosis of in situ breast cancer. Receiving a telephone call about breast cancer diagnosis may be the norm rather than the exception in health care today. Trends in practice, as well as current best practices based primarily on expert opinion, may not provide optimal care for women diagnosed with breast cancer. Patient outcome research to guide future practice, such as the impact of modes of delivery of bad news, is urgently needed to determine appropriate patient-centered approaches for notification of breast cancer diagnoses.

Abstract A62: Differences in sexual dysfunction between lesbian, bisexual, and heterosexual female breast cancer survivors

Abstract Purpose: The purpose of this study was to examine (1) differences in sexual dysfunction between lesbian, bisexual, and heterosexual female breast cancer survivors including (2) patient-provider communication regarding sexual problems, and (3) receipt of treatment for sexual complaints. Methods: Dr. Susan Love Research Foundation's The Health of Women (HOW) Study™ is a cohort study of approximately 40,000 women with and without breast cancer who have responded to one or more online, self-administered surveys. This study includes data from women who completed the baseline and quality-of-life surveys. Women were included if they had a previous diagnosis of breast cancer and if they self-identified as lesbian, bisexual, or heterosexual (N=3,833). Sexual dysfunction was defined as “ever [having] significant problems with change in sexual interest.” We also examined whether women (1) thought that their cancer/cancer treatment was “the primary cause of [her] most significant problems with changes in sexual interest”, (2) “talked to [her] doctor about [her] problems with change in sexual interest”, and (3) “received treatment for [her] problems with change in sexual interest.” Analyses included chi-square test of independence and bivariate logistic regression. Differences were considered significant at p<0.10. Results: Distribution of sexual orientation was as follows: heterosexual (96%), lesbian (3%), and bisexual (1%). Over a third of women reported sexual dysfunction (34%); 78% of them attributed these changes in sexual interest to their breast cancer treatment. Bisexual women were most likely to report changes in sexual interest (48%) when compared to lesbian (34%) and heterosexual (34%) women. Bisexual women were 77% more likely to report changes in sexual interest compared to heterosexual women (OR=1.77; 95%CI: 0.99-3.17, p<0.10); however, bisexual women were less likely than heterosexual women to talk to their doctor about this (OR=0.40; 95% CI: 0.16-0.94, p<0.10). All women reported similar levels of bother from changes in sexual interest (62% reporting being bothered by changes in sexual interest “quite a bit” or “very much”). Irrespective of sexual orientation, less than 20% of women received treatment for changes in sexual interest. Conclusion: Sexual dysfunction was a common issue identified by women breast cancer survivors, particularly among bisexual women who were also less likely to report sexual dysfunction to their provider. Overall, treatment for sexual dysfunction was low for all women, suggesting a potential gap in survivorship care more broadly. These findings suggest that experiencing problematic changes in sexual interest was more common among bisexual breast cancer survivors, who may face unique challenges in receiving needed survivorship care. Targeted interventions for these women may be warranted to increase patient-provider communication about sexual dysfunction and to improve the burden of sexual dysfunction among bisexual women. Citation Format: Christopher W. Wheldon, Megan C. Roberts, Michelle I. Silver, Ulrike Boehmer. Differences in sexual dysfunction between lesbian, bisexual, and heterosexual female breast cancer survivors [abstract]. In: Proceedings of the Tenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2017 Sep 25-28; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2018;27(7 Suppl):Abstract nr A62.

Metastatic Breast Cancer Collateral Damage Project (MBCCD): Scale development and preliminary results of the Survey of Health, Impact, Needs, and Experiences (SHINE).

Until recently, people with metastatic breast cancer (MBC) had a very poor prognosis. New treatment approaches have prolonged the time that people with MBC live, but their quality of life has received less attention. Consequently, the needs and concerns across financial, vocational, psychological, social, and physical domains in MBC patients are poorly understood-particularly regarding the collateral damage or longer-term, life-altering impacts of MBC and its treatments. This study's aims were to characterize MBC-related collateral damage, identify groups most likely to experience collateral damage, and examine its associations with psychological health, illness management, and health behaviors. Participants (N = 515) with MBC were recruited from Dr. Susan Love Research Foundation's Army of Women® and other advocacy organizations. Participants completed questionnaires of MBC-related collateral damage, depressive symptoms, anxiety, self-efficacy for managing oncologic treatments andphysical symptoms, sleep, and physical activity. Eight domains of MBC-related collateral damage, as well as MBC-related benefit finding, were reliably characterized. Concerns about mortality/uncertainty were most prominent. Participants also endorsed high levels of benefit finding. Participants younger than 50years, with limited financial resources, or with children under 18 at home reported the most collateral damage. Collateral damage was associated significantly with compromised psychological health, lower illness management efficacy, and poorer health behaviors, beyond sociodemographic and medical characteristics. Subgroups of MBC patients report long-term, life-altering consequences of MBC and its treatments, which relate to important health outcomes. Clinical implications and recommendations are discussed.

Abstract P4-06-01: Provider practice and compliance with NCCN clinical guidelines for BRCA1/2 testing: Findings from Dr. Susan Love Research Foundation's The Health of Women (HOW) StudyTM

Abstract BRCA1/2-attributable cancers disproportionately contribute to breast cancer mortality, but are relatively infrequent in the general population, making healthcare practices surrounding BRCA1/2 mutation carrier status difficult to study. This analysis leverages a large dataset of over 40,000 individuals with and without breast cancer from Dr. Susan Love Research Foundation's The Health of Women (HOW) StudyTM to evaluate factors associated with healthcare provider compliance with National Comprehensive Cancer Network (NCCN) guidelines for BRCA1/2 testing. Data from women ages 18 and older who completed baseline and family history questionnaires were included in our sample (n=22,410). We examined whether: (1) genetic testing receipt was aligned with NCCN guidelines for BRCA1/2 genetic testing, (2) guideline-consistent use of BRCA1/2 testing varied by race and education, (3) those who had genetic testing received pre-test genetic counseling, and (4) guideline-consistent BRCA1/2 testing differed among those who received pre-test genetic counseling. In this population, 4326 women (19.5%) reported BRCA1/2 testing. Of these women, 70.3% of women were eligible for testing based on NCCN guidelines (vs. 29.8% who did not qualify). Women with higher levels of education were less likely to be over-tested or under-tested than those with lower levels of education (p<0.001); no differences were observed by Hispanic ethnicity (Hispanic vs. non-Hispanic, p=.71) or race (white vs. non-white, p=0.23). Among those tested for BRCA1/2, 65.6% (n=2976) received pre-test genetic counseling. Those who received pretest counseling were more likely to receive genetic testing consistent with NCCN guidelines than those who did not receive pretest counseling (73.8% vs 63.6%, p<0.001). 58% received post-test counseling by a genetics provider (n=2515) compared to 33.9% who received genetic results from their primary care provider or another provider (n=1465). Those who received genetic test results from a genetics provider were more likely to have received BRCA1/2 testing that was compliant with NCCN guidelines than those who received their genetic test results from another type of provider, though by a modest amount (74.2% vs 70.6%, p=0.01). In this population, we found that pretest-genetic counseling was associated with higher rates of NCCN guideline-consistent recommendations for BRCA1/2 genetic testing, and a woman's educational level appears to be associated with higher rates of guideline concordant use of BRCA1/2 testing. Overall, these findings showed higher rates of BRCA1/2 testing and receipt of counseling than previously reported, which may be partially reflective of this unique study population of motivated volunteers. As genetics is increasingly incorporated into cancer prevention, there is an urgent need to examine adherence to genetic testing guidelines to ensure appropriate use. Citation Format: Roberts MC, Loud J, Klein WMP, Silver MI. Provider practice and compliance with NCCN clinical guidelines for BRCA1/2 testing: Findings from Dr. Susan Love Research Foundation's The Health of Women (HOW) StudyTM [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 P4-06-01.

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)

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<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<.01). Participants younger than 50 years and those with lower financial status reported higher concerns on all subscales (ps<0.01), except for benefit finding (ps>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<0.05). Being married was significantly associated with higher concern for others and lower concern about finances (ps<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.

Abstract P6-12-07: Metastatic breast cancer collateral damage project: Associations of disease-specific concerns and experiences with psychological health, illness management, and health behaviors

Abstract Rationale: Research has identified risk and protective factors that predict health and well-being in adults with breast cancer, but this work has been focused largely on women with early-stage disease. Metastatic breast cancer (MBC) patients report worse psychological health and poorer quality of life compared to those with early-stage breast cancer. We investigated whether a newly developed measure of MBC-specific concerns and experiences, the Survey of Health, Impact, Needs, and Experiences (SHINE), is associated with psychological health, illness management, and health behaviors in a sample of MBC patients. Method: SHINE includes 36 items capturing the experience of MBC, including verbatim statements from previously collected crowdsourcing data. Participants (N=515) were recruited from Dr. Susan Love Research Foundation's Army of Women® and other advocacy organizations. Participants also completed measures of psychological health (i.e., depression, anxiety), illness management (i.e., self-efficacy for managing medications/treatments and symptoms), and health behaviors (i.e., sleep, degree of moderate physical activity). The nine SHINE subscales, along with age, marital status, financial status, children, metastatic site location(s), and current medical treatment(s), were entered as simultaneous predictors in a multivariate regression. Psychological health, illness management, and health behaviors were entered as dependent variables in separate models. Results: With demographic and medical variables controlled, MBC-specific concerns were associated significantly with depressive symptoms (ΔR2=.38), anxiety (ΔR2=.37), efficacy for medication/treatment management (ΔR2=.08), efficacy for symptom management (ΔR2=.32), sleep disruption (ΔR2 =.10), and physical activity (ΔR2=.17), with all ps<.01. Specifically, higher depressive symptoms and anxiety were associated greater mortality/uncertainty concerns (ps<.01), greater social isolation/withdrawal (ps<.01), and higher self-concept disruption (ps<.02). Anxiety was uniquely associated with greater financial concerns (p<.02), whereas depression was uniquely associated with fewer positive experiences (p<.05). Higher self-efficacy for managing symptoms was related to more positive experiences, higher mortality concerns, and more self-concept and activity disruption (ps<.01), whereas higher efficacy for managing medications/treatments was associated with lower social isolation/withdrawal (p<.03). More sleep disruption was associated with higher concern for others (p<.05), and less physical activity was associated with more activity disruption (p<.01). Conclusions: After controlling for demographic and medical characteristics, MBC-specific concerns were related significantly to psychological health, self-efficacy for illness management, and health behaviors. Mortality/uncertainty concerns, social isolation/withdrawal, and self-concept disruption were especially important correlates of depressive symptoms, anxiety, and MBC-related self-efficacy. Higher concern for others was related to more sleep disruption. Approaches that address these MBC-specific concerns and promote positive experiences may be beneficial for patients. Citation Format: Williamson T, Stanton A, Clague DeHart J, Jorge A, Eshraghi L, Cooper Ortner H, Love S. Metastatic breast cancer collateral damage project: Associations of disease-specific concerns and experiences with psychological health, illness management, and health behaviors [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 P6-12-07.

Risk Belief and Attitude Formation From Translated Scientific Messages About PFOA, an Environmental Risk Associated With Breast Cancer

ABSTRACTEvidence regarding possible environmental causes of breast cancer is advancing. Often, however, the public is not informed about these advances in a manner that is easily understandable. This research translates findings from biologists into messages at two literacy levels about perfluorooctanoic acid (PFOA), a possible environmental contributor to breast cancer. The Heuristic Systematic Model (HSM) was used to investigate how ability, motivation, and systematic and heuristic processing lead to risk beliefs and, ultimately, to negative attitudes for individuals receiving translated scientific messages about PFOA. Participants (N = 1,389) came from the Dr. Susan Love Research Foundation’s Army of Women. Findings indicated that ability, in the form of translated messages, predicted systematic processing, operationalized as knowledge gain, which was negatively associated with formation of risk beliefs that led to negative attitudes toward PFOA. Heuristic processing cues, operationalized as perceived message quality and source credibility, were positively associated with risk beliefs, which predicted negative attitudes about PFOA. Overall, more knowledge and lower literacy messages led to lower perceived risk, while greater involvement and ratings of heuristic cues led to greater risk perceptions. This is an example of a research, translation, and dissemination team effort in which biologists created knowledge, communication scholars translated and tested messages, and advocates were participants and those who disseminated messages.

Abstract C84: An efficient resource to accelerate research into the cause and prevention of breast cancer: The Army of Women®

Abstract Background: It is well established that more research into the cause and prevention of breast cancer is needed. While many studies are done in cell lines and laboratory animals, translation of findings to women often falters due to perceived difficulty in recruiting women for research. The Dr. Susan Love Research Foundation's (DSLRF) Army of Women® (AOW) program started in 2008 as an on-line resource designed to facilitate the recruitment of women to participate in research aimed at identifying the cause and prevention of breast cancer. Methods: Researchers submit a proposal to the DSLRF Scientific Advisory Committee. If a study is accepted, a mass e-mail describing the study procedures and inclusion/exclusion criteria is sent to the entire AOW database. Women sign up at www.armyofwomen.org to join and receive AOW e-mails about breast cancer research studies. Women self-select based on interest and study criteria, and undergo a secondary on-line screening before contact information is passed on to the researcher for the enrollment process. Results: Over 378,000 women have signed up, including survivors and women without a history of breast cancer, ranging from ages 18 to 100, representing all 50 US states and 49 countries. To date, the AOW has recruited for 93 studies, recruiting both regionally and nationally, that vary from biomarker and genetic research to psycho-social and quality of life studies. With more than 89,800 AOW members having participated in the research process, this method of recruitment has been found to be effective and efficient. The diversity of the AOW members has proved beneficial for many studies, including those enrolling racial/ethnic minorities. To date, the AOW has recruited for six studies focused specifically on African-American women. These studies needed a combined 640 individual African-American subjects and 150 family cohorts; the AOW was successful in recruiting 114 individual participants and 190 family cohorts for the research. The AOW has also been involved in closing the recruitment of three studies for Latinas, all national in scope. For one study, 43 subjects were recruited within 13 days. Additionally, the AOW exceeded a research team's expected recruitment for a study focused on Asian American participants in Northern California. Conclusions: The AOW has proved to be a successful resource for scientists to accelerate accrual, expand the number and diversity of their subject population and to obtain exactly the type of specimens they need when they need it. This partnership between women and scientists has revolutionized research and accelerated efforts to eradicate breast cancer. The public is ready and willing to partner with the research community to find the answer to urgent clinical problems. To help expand our reach and include more participants from varying ethnic backgrounds in research studies, DSLRF has launched a pilot initiative, Research Ambassadors for Community Health (ReACH) Program. Through this program we have recruited Los Angeles community members to serve as community liaisons for minority populations to create awareness about participating in breast cancer research. Preliminary data from the pilot launch will be available in 2016. Citation Format: Susan M. Love, Amaka Obidegwu. An efficient resource to accelerate research into the cause and prevention of breast cancer: The Army of Women®. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr C84.

The 8th international symposium on the breast: Using next-generation science to understand the normal breast and the development of breast cancer- conference report.

Dr. Susan Love Research Foundation is committed to performing and advancing research that will lead to the discovery of what causes cancer to develop in the human breast. As part of this effort, the Foundation hosted the 8th International Symposium on the Breast in Santa Monica, Calif., Feb. 19 to Feb. 21, 2015. More than 120 forward-thinking clinical researchers, epidemiologists, pathologists, basic scientists, translational investigators, and breast cancer advocates from six countries attended this year's conference, "Using Next Generation Science to Understand the Normal Breast and the Development of Cancer." The highlights from this year's symposium are summarized in this report.

Abstract B11: An efficient resource to accelerate research into the cause and prevention of breast cancer: The Army of Women

Abstract Background: It is well established that more research into the cause and prevention of breast cancer is needed. While studies are done in cell lines and lab animals, translation of findings to women is often delayed due to difficulty in recruitment. To address this problem, the Dr. Susan Love Research Foundation formed the Army of Women® (AOW); an online recruitment resource designed to partner women with researchers in order to accelerate breast cancer research. Methods: Researchers submit a proposal to the Dr. Susan Love Research Foundation's Scientific Advisory Committee. If a study is accepted, a mass e-mail describing the study procedures and inclusion/exclusion criteria is sent to the entire AOW database. Women sign up at www.armyofwomen.org to join and receive AOW e-mails about breast cancer research studies. Women self-select based on interest and study criteria, and undergo a secondary online screening before contact information is passed on to the researcher for the enrollment process. Results: Over 376,000 women have signed up, including survivors and women without a history of breast cancer, ranging from ages 18 to 100, representing all 50 US states and 49 countries. To date, the AOW has recruited for 87 studies. The diversity of the AOW members has proved beneficial for many studies, such as those needing to enroll racial/ethnic minorities, women of varying sexual orientations, or young survivors. A secondary goal of the AOW is to assist researchers new to research with human subjects. The AOW has successfully helped researchers cross the chasm, coaching them on what it takes to transition their research from animal models to human subjects. Conclusions: The AOW has proved to be a successful resource for scientists to accelerate accrual, expand the number and diversity of their subject population and to obtain exactly the type of specimens they need when they need it. This partnership between women and scientists has revolutionized research and accelerated efforts to eradicate breast cancer. The public is ready and willing to partner with the research community to find the answers to urgent clinical problems. Citation Format: Susan M. Love, Leah D. Eshraghi. An efficient resource to accelerate research into the cause and prevention of breast cancer: The Army of Women. [abstract]. In: Proceedings of the Thirteenth Annual AACR International Conference on Frontiers in Cancer Prevention Research; 2014 Sep 27-Oct 1; New Orleans, LA. Philadelphia (PA): AACR; Can Prev Res 2015;8(10 Suppl): Abstract nr B11.

Abstract P1-09-31: Crowdsourcing the collateral damage from breast cancer treatment

Abstract INTRODUCTION: Although survivorship research focuses on quality of life after breast cancer treatments, it is usually initiated by providers and focused on previously reported side effects and consequences of treatment. Patients are often reluctant to report side effects they may experience during and after cancer treatment and providers are often reticent to ask. In an effort to explore the patient perspective, the Dr. Susan Love Research Foundation convened a collaboration of advocacy groups to "crowdsource" women’s questions regarding collateral damage from treatment. These concerns will then be incorporated into the Health of Women [HOW] Study, an ongoing, online cohort study of breast cancer open to anyone aged 18 or older. METHODS: Emails to current HOW participants were sent out July 2013 to solicit questions about collateral damage. In October 2013, we undertook the design of a new website landing page for the submission of questions, partnered with other breast cancer advocacy organizations, and began collecting responses. Responses were then categorized to guide questionnaire development. RESULTS: Sixteen breast cancer and other advocacy organizations came together to support this project. Emails to current HOW participants resulted in 1191 responses. The website landing page resulted in an additional 3000 responses. Overall, 16.8% of respondents complained of fatigue, 16.3% of memory problems, 15.7% of anxiety and/or depression, and 14.0% of numbness/neuropathy. Other less frequently reported problems included problems with nail growth, vision, hearing, urinary tract infections, and allergy-like symptoms. CONCLUSION: Through this approach, we received an overwhelming number of responses about collateral damage from treatment. Many of the issues are known side effects, while others are less commonly reported, but debilitating nonetheless. We will next compare responses to previously validated questionnaires, develop a comprehensive collateral damage questionnaire for inclusion in the HOW Study, and generate a report for publication to be distributed to the participants. Citation Format: Susan M Love, Amaka Obidegwu, Christine A Fischetti. Crowdsourcing the collateral damage from breast cancer treatment [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P1-09-31.

Quality of Breast Cancer Care in the U.S.: A National Analysis of Medicare Beneficiaries, 2003-2007

Quality of Breast Cancer Care in the U.S.: A National Analysis of Medicare Beneficiaries, 2003-2007

Tapping the wisdom of the crowd: New initiatives are engaging the public as active participants in biomedical research

Tapping the wisdom of the crowd: New initiatives are engaging the public as active participants in biomedical research