Sisters Network Research Articles

Sisters Network, Inc.: the Importance of African American Survivor Advocates in Addressing Breast Cancer Disparities.

Purpose of ReviewTo explain the role of African American survivor advocates in addressing breast cancer disparities.Recent FindingsThe Sisters Network, Inc. is a national African American survivor advocates organization, founded in Houston Texas in 1994 and active today via affiliate chapters throughout the United States as well as its national headquarters. The Sisters Network provides essential outreach, educational, and research support to the breast oncology community.SummaryThe breast oncology community should partner with the Sisters Network and support their activities in efforts to achieve breast health equity.

Patient Perspectives on the Financial Costs and Burdens of Breast Cancer Surgery.

Although financial toxicity is a well-documented aspect of cancer care, little is known about how patients narratively characterize financial experiences related to breast cancer treatment. We sought to examine these patient experiences through mixed methods analysis. Women (≥ 18 years old) with a history of breast cancer were recruited from the Love Research Army and Sisters Network to complete an 88-item electronic survey including an open-ended response. Quantitative data were used to sort and stratify responses to the open-ended question, which comprised the qualitative data evaluated here. Descriptive statistics and qualitative content analysis were used to evaluate the financial costs and other burdens resulting from breast cancer surgery. In total, 511 respondents completed the survey in its entirety and wrote an open-ended response. Participants reported significant financial burden in different categories including direct payments for medical care and indirect costs such as lost wages and travel expenses. Treatment-related costs burdened participants for years after diagnosis, forming a financial arc for many participants. Discrepancies existed between the degree of financial burden reported on multiple-choice questions and participants' corresponding open-ended descriptions of financial burden. Participants described a lack of communication surrounding costs with their providers and difficulty negotiating payments with insurance. Breast cancer care can result in ongoing financial burden years after diagnosis among all patients, even those with adequate insurance patient populations.

Abstract S11-02: Patient-reported impact of the COVID-19 pandemic on breast cancer screening, diagnosis, and treatment: A national survey

Abstract Introduction: The COVID-19 pandemic has altered the health care delivery system. The purpose of this study was to determine the impact of the COVID-19 pandemic on breast cancer screening, diagnosis, and treatment. Methods: Potential survey respondents were identified through partnerships with breast cancer organizations including Dr. Susan Love Foundation for Breast Cancer Research, SHARE, Survivingbreastcancer.org, Sisters Network Inc., the African American Breast Cancer Alliance, and through ResearchMatch.org. Study information was shared via social media, websites, or email. Individuals were eligible for this study if they: 1) receive routine breast cancer screening, or 2) are undergoing diagnostic evaluation for breast cancer, or 3) had ever been diagnosed with breast cancer. Participants accessed and completed the 10-15-minute REDCap survey either by emailing the research team and receiving a private survey link or by clicking a public link. The survey collected information on respondent demographics; breast cancer screening and diagnosis; the extent to which screening, diagnosis, or treatment had been changed, delayed, or canceled because of COVID-19; personal protective practices; extent of worry about financial and health implications of COVID-19; and use of telemedicine. We used descriptive statistical analyses to better understand the impact of the COVID-19 pandemic on respondents. Results: There are currently 415 survey respondents, 404 of whom agreed to participate in the study. 46.8% (N=189) of respondents were white, 26.7% (N=108) Black, 6.7% (N=27) Asian, and 5.5% Hispanic or Latino (N=22). Most respondents were between the ages of 50 and 69 years (52.2%, N=211). 43.3% (N=175) of respondents had been diagnosed with breast cancer and, of those, 36% (N=63) were in active treatment. More than a quarter of participants (26.5%, N=107) reported delayed or canceled breast cancer care due to COVID-19; the most frequently affected care was screening mammogram, ultrasound, or MRI (97.2%, N=104). 20.6% (N=13) of women in active treatment reported delayed or canceled surgery, chemotherapy, or radiation visits. 22.3% (N=90) of respondents reported that an in-person visit was changed to a phone call or videoconference, and 39.1% (N=158) said they had discussed COVID-19 with a health care provider. 29.1% (N=51) of those with breast cancer were worried or very worried that the COVID-19 pandemic would make it harder for them to get cancer care; among those without breast cancer, 34.9% (N=80) were worried that COVID-19 would make it harder to obtain health care, including breast cancer screening and diagnosis. Conclusions: The COVID-19 pandemic continues to disrupt breast cancer-related care, primarily screening. Planning and coordination are necessary to ensure the timely return of these patients to care. Most participants agreed to be contacted for follow-up, allowing us to investigate the long-term effects of delayed breast cancer screening, diagnostic evaluation, and treatment on health outcomes. Citation Format: Erica T. Warner, Emily Restrepo, Christine Benjamin, Ricki Fairley, Laura Roudebush, Leah Eshraghi, Crystal Hertz, Simo Du, Laura Carfang. Patient-reported impact of the COVID-19 pandemic on breast cancer screening, diagnosis, and treatment: A national survey [abstract]. In: Proceedings of the AACR Virtual Meeting: COVID-19 and Cancer; 2020 Jul 20-22. Philadelphia (PA): AACR; Clin Cancer Res 2020;26(18_Suppl):Abstract nr S11-02.

Financial Costs and Burden Related to Decisions for Breast Cancer Surgery.

Financial toxicity is a well-recognized adverse effect of cancer care, yet little is known about how women consider treatment costs when facing preference-sensitive decisions for breast cancer surgery or how surgical treatment choice affects financial harm. We sought to determine how financial costs and burden relate to decisions for breast cancer surgery. Women (≥ 18 years old) with a history of breast cancer were recruited from the Army of Women and Sisters Network to complete an 88-item electronic survey. Descriptive statistics and regression analysis were used to evaluate the impact of costs on surgical decisions and financial harm after breast cancer surgery. A total of 607 women with stage 0 to III breast cancer were included. Most were white (90%), were insured privately (70%) or by Medicare (25%), were college educated (78%), and reported household incomes of more than $74,000 (56%). Forty-three percent underwent breast-conserving surgery, 25% underwent mastectomy, 32% underwent bilateral mastectomy, and 36% underwent breast reconstruction. Twenty-eight percent reported that costs of treatment influenced their surgical decisions, and at incomes of $45,000 per year, costs were prioritized over breast preservation or appearance. Overall, 35% reported financial burden as a result of their cancer treatment, and 78% never discussed costs with their cancer team. When compared with breast-conserving surgery, bilateral mastectomy with or without reconstruction was significantly associated with higher incurred debt, significant to catastrophic financial burden, treatment-related financial hardship, and altered employment. Among the highest incomes, 65% of women were fiscally unprepared, reporting higher-than-expected (26%) treatment costs. Cancer treatment costs influenced decisions for breast cancer surgery, and comparably effective surgical treatments differed significantly in their risk of patient-reported financial burden, debt, and impact on employment. Cost transparency may inform preference-sensitive surgical decisions and improve patient-centered care.

Black Women’s Transnational Activism and the World Council of Churches

Abstract This article considers the internationalisation and institutionalisation of the fight against European and global racism and sexism within the World Council of Churches in the 1980s and 1990s. It presents the ways in which the Women Under Racism sub-programme, the SISTERS network that emerged from it, as well as their respective coordinators—the Afro-American activist Jean-Sindab and the Afro- Brazilian activist Marilia Schüller –facilitated encounters between Black-European women. In turn, this paper analyses Black-European women’s agency within these institutional and transnational antiracist and gendered spaces. I argue that the WUR and the SISTERS network were used by Black-European female activists to meet each other and other women of colour, and to voice and share their experiences publicly. These international gatherings also stimulated a transnationalisation and a Europeanisation of their activism, while being spaces where they affirmed multiple and overlapping identifications.

Do Cancer-Related Fatigue and Physical Activity Vary by Age for Black Women With a History of Breast Cancer?

IntroductionCancer-related fatigue (CRF) is the most uncomfortable symptom among women with a history of breast cancer. Black women are more likely than women of other racial/ethnic groups to have CRF risk factors, such as physical inactivity and obesity, yet CRF studies have not focused on black women. We conducted a cross-sectional analysis to assess CRF and physical activity among black women survivors of breast cancer.MethodIn May and July of 2012, 267 members (mean age, 54 y) of the Sisters Network, Inc, completed an online survey of sociodemographic characteristics, medical characteristics, and physical activity, and a fatigue instrument (the Functional Assessment of Chronic Illness Therapy [FACIT]). Multiple linear regression assessed fatigue and physical activity compliance (ie, 150 minutes of moderate to vigorous physical activity per week).ResultsParticipants had an average FACIT score of 32.3, Fatigue was greater (P < .001) among the 56% of women not meeting physical activity guidelines. In multivariable analysis, correlates of fatigue showed that physical activity compliance (β = 3.20, P < .001) and older age group (50–59 y: β = 3.98, P = .001; ≥60 y,: β = 3.76, P = .003) were associated with less fatigue. The interaction between age and fatigue was also significant: mean differences in fatigue by physical activity level were obvious only among women younger than 50 years. (P < .001).ConclusionPhysical activity compliance was associated with a lower level of fatigue. However, the effect of physical activity on fatigue may differ by age. Interventions aimed at curbing CRF in black women should consider age-appropriate strategies that can be integrated into existing lifestyles.

Abstract 4215: Cancer-related fatigue and physical activity vary by age for black women with a history of breast cancer

Abstract Purpose: Cancer-related fatigue is the most discomforting symptom among women with a history of breast cancer. Black women are more likely to experience risk factors for cancer-related fatigue, like physical inactivity and obesity, yet cancer-related fatigue studies have not explicitly focused on Black women. This cross-sectional analysis assesses cancer-related fatigue and physical activity among Black female breast cancer survivors. Methods: In May and July of 2012, 266 members of the Sisters Network, Inc completed an online survey on: demographics, cancer history and treatment, fatigue using the 13-item Function Assessment of Chronic Illness Therapy (FACIT) Fatigue Scale, and engagement in ≥150 minutes per week of physical activity (CDC guideline). Multiple linear regression assessed relationships between fatigue and physical activity. Results: The average participant was 54 (SD=9) with a FACIT score of 13.63, indicating “severe fatigue”. Fatigue was greater (p=0.02) among the 56% of women meeting physical activity guidelines. Multivariable analysis showed that meeting physical activity guidelines (β=-3.01, p=0.01) and higher age group (50-59: -4.75, p=0.001; 60+: -4.38, p=0.01) were associated with greater fatigue. An interaction plot showed that differences in fatigue for those meeting or not meeting physical activity guidelines is largest among Black women under age 50. Conclusions: Meeting physical activity guidelines was associated with greater cancer-related fatigue, which was most pronounced for those under age 50. Interventions for Black breast cancer survivors with cancer-related fatigue should consider physical activities that can be integrated into existing tasks and provide age-appropriate resources to address physical and emotional fatigue domains. Keywords: breast cancer; fatigue; age; Black/African-American; physical activity Citation Format: Melody A. Swen, Amandeep Mann, Raheem Paxton, Lorraine T. Dean. Cancer-related fatigue and physical activity vary by age for black women with a history of breast cancer [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2017; 2017 Apr 1-5; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2017;77(13 Suppl):Abstract nr 4215. doi:10.1158/1538-7445.AM2017-4215

Breast Cancer and African Ancestry: Lessons Learned at the 10-Year Anniversary of the Ghana-Michigan Research Partnership and International Breast Registry.

Women with African ancestry in western, sub-Saharan Africa and in the United States represent a population subset facing an increased risk of being diagnosed with biologically aggressive phenotypes of breast cancer that are negative for the estrogen receptor, the progesterone receptor, and the HER2/neu marker. These tumors are commonly referred to as triple-negative breast cancer. Disparities in breast cancer incidence and outcome related to racial or ethnic identity motivated the establishment of the International Breast Registry, on the basis of partnerships between the Komfo Anokye Teaching Hospital in Kumasi, Ghana, the University of Michigan Comprehensive Cancer Center in Ann Arbor, Michigan, and the Henry Ford Health System in Detroit, Michigan. This research collaborative has featured educational training programs as well as scientific investigations related to the comparative biology of breast cancer in Ghanaian African, African American, and white/European American patients. Currently, the International Breast Registry has expanded to include African American patients throughout the United States by partnering with the Sisters Network (a national African American breast cancer survivors’ organization) and additional sites in Ghana (representing West Africa) as well as Ethiopia (representing East Africa). Its activities are now coordinated through the Henry Ford Health System International Center for the Study of Breast Cancer Subtypes. Herein, we review the history and results of this international program at its 10-year anniversary.

Abstract C32: Developing culturally appropriate interventions providing psychosocial and reproductive health support to young breast cancer survivors: Evaluation findings

Abstract Introduction/Objectives: Research demonstrates that after a breast cancer diagnosis, young women, especially those of racial and ethnic groups, may experience a more negative impact on their quality of life, emotional functioning, and reproductive health than older women. For women under the age of 45, African American women have the highest breast cancer incidence of any racial/ethnic group, and there is an increased risk of hereditary breast cancer among Jews who carry BRCA mutations. In conjunction with Sisters Network Inc. and Sharsheret, The Centers for Disease Control and Prevention launched a formative evaluation to understand African American and Jewish young breast cancer survivors' (YBCS) psychosocial and reproductive health needs and preferred communication channels to obtain needed health information. Methods: Sisters Network Inc. conducted four focus groups with African American YBCS. Sharsheret conducted four groups with Jewish YBCS. Thematic analysis identified major themes/patterns within and across the focus groups. Results: Fertility and sexual health were major YBCS concerns. Participants reported barriers to obtaining psychosocial and reproductive health information, including sexual taboos and lack of provider sensitivity to address these needs. Participants said that breast cancer resources are not tailored to YBCS. Participants preferred to receive breast cancer information via multiple channels, including written materials, the Internet, telephone and smartphone applications. Discussion/Implications: African American and Jewish women encounter similar barriers to obtaining psychosocial and reproductive health information. Both groups report difficulty in obtaining relevant health information and advice from their medical providers. Study findings may be used for developing of culturally-appropriate communication and interventions for YBCS that would help eliminate breast cancer health disparities in YBCS. Citation Format: Temeika L. Fairley, Natasha Buchanan, Ashani Johnson-Turbes, Leslie R. Schover, Angela R. Moore, Brandie Yancy, Dara Schleuter, Mary-Ann K. Hall, Kelly P. Hodges, Rochelle Shoretz. Developing culturally appropriate interventions providing psychosocial and reproductive health support to young breast cancer survivors: Evaluation findings. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr C32. doi:10.1158/1538-7755.DISP13-C32

A Community-based Collaborative Approach to Improve Breast Cancer Screening in Underserved African American Women

Although African American women in the United States have a lower incidence of breast cancer compared with white women, those younger than 40 years actually have a higher incidence rate; additionally, African American women are more likely to die from breast cancer at every age compared with white women. Racial disparities in breast cancer mortality rates are especially significant in Maryland, which ranks fifth in the nation for breast cancer mortality, and in Baltimore City, which has the second highest annual death rate for African American women in Maryland. To address this disparity in care, Med-IQ, an accredited provider of CME, collaborated with Sisters Network Baltimore Metropolitan, Affiliate Chapter of Sisters Network® Inc., the only national African American breast cancer survivorship organization, to sponsor their community-based educational outreach initiative. The collaborative mission was to engage at-risk African American women, their families, local organizations, healthcare professionals, and clinics, with the goals of increasing awareness, addressing fears that affect timely care and diagnosis, and encouraging women to obtain regular mammograms. Intervention strategies included (1) a "Survivor Stories" video, (2) patient outreach consisting of neighborhood walks and an educational luncheon, and (3) a community outreach utilizing direct mailings to local businesses, community groups, and healthcare professionals. Trusted and well-known community resources were presented as mediums to promote the initiative, yielding achievement of broader and more effective outcomes. As a result of this patient-friendly initiative, two (2) of the women who sought screening were diagnosed with breast cancer and underwent treatment.

African-American breast cancer survivors’ preferences for various types of physical activity interventions: a Sisters Network Inc. web-based survey

Needs assessments are essential to developing lifestyle interventions for minority populations. To our knowledge, no physical activity (PA) needs assessment studies have been conducted for African-American (AA) breast cancer survivors. The purpose of this study was to determine the PA intervention preferences of AA breast cancer survivors and determine whether these preferences differ according to medical and sociodemographic factors. AA breast cancer survivors (n = 475, mean age = 54 years) were recruited using ads sent via email and social media sites. Preferences for the mode of intervention delivery were assessed via web-based questionnaires. Descriptive statistics were used to characterize their interests in PA interventions, and subgroup differences were assessed. About 49 % (142 out of 291) of the participants who completed the survey were obese and 54 % did not meet the recommended guidelines for PA. Most (90 %) participants reported that they could participate in PA, and many (67 %) indicated that they were interested in receiving program materials. Participants expressed the greatest interest in email (50 %)-, web (48 %)-, or mail-based (45 %) over group (39 %), and telephone (10 %). Women also expressed the greatest interest in participating in studies that promoted walking and resistance or strength training. Intervention preferences did not differ significantly (P > 0.05) across sociodemographic or medical factors. Most AA breast cancer survivors can participate in PA, and many are interested in interventions that promoted walking and resistance training and were delivered via the email or web. The development of culturally sensitive interventions that provide activities consistent with preferences can assist AA breast cancer survivors to adopt and maintain a healthy lifestyle. Despite evidence that AA breast cancer survivors are at increased risk for poor breast cancer-specific outcomes, they are underrepresented in clinical trials promoting positive health behaviors. In this study, we propose to assess their exercise preferences and receptivity to a culturally appropriate PA intervention developed in collaboration with the Sisters Network Inc. Health promotion programs developed in collaboration with a community-based organization may aid in the development of research tools and resources that AA breast cancer survivors are receptive to using.

Lifestyle Behaviors of African American Breast Cancer Survivors: A Sisters Network, Inc. Study

IntroductionAfrican American breast cancer survivors experience poor cancer outcomes that may, in part, be remedied by healthy lifestyle choices. Few studies have evaluated the health and lifestyle behaviors of this population. The purpose of this study was to characterize the health and lifestyle habits of African American breast cancer survivors and evaluate the socio-demographic and medical correlates of these behaviors.MethodsA total of 470 African American breast cancer survivors (mean age = 54 years) participated in an online survey. All participants completed measures assessing medical and demographic characteristics, physical activity, and sedentary behavior. Chi-square tests for association, nonparametric tests, and logistic regression models were used to assess associations. All statistical tests were two sided.ResultsAlmost half (47%) of the women met the current guidelines for physical activity, almost half (47%) were obese, and many reported having high blood pressure (53%) or diabetes (21%). The prevalence of high blood pressure, diabetes, and high cholesterol increased by age (P<0.001), and obese women had a higher prevalence of high blood pressure (63% vs. 44%) and diabetes (21% vs. 12%) than did non-obese women (all P<0.05). Obese women participated in significantly fewer total minutes of physical activity per week (100 minutes/week) than did non-obese women (150 minutes/week; P<0.05). The number of comorbid conditions was associated with increased odds for physical inactivity (odds ratio = 1.40) and obesity (odds ratio = 2.22).ConclusionMany African American breast cancer survivors had chronic conditions that may be exacerbated by poor lifestyle choices. Our results also provide evidence that healthy lifestyle interventions among obese African American breast cancer survivors are urgently needed.

Sisters Peer Counseling in Reproductive Issues After Treatment (SPIRIT)

AbstractBACKGROUND:African American breast cancer survivors may be at high risk for reproductive health problems, including menopause symptoms, sexual dysfunction, and distress about cancer‐related infertility. The authors partnered with Sisters Network Inc. to create the Sisters Peer Counseling in Reproductive Issues After Treatment (SPIRIT) program, a culturally sensitive intervention program that combined a written workbook and peer counseling.METHODS:Three hundred women were randomized to receive either the workbook plus 3 in‐person sessions with a trained peer counselor or the workbook plus ≤30 minutes of telephone counseling to be initiated by the participant. Questionnaires at baseline, post‐treatment, and at 6‐month and 12‐month follow‐up assessed emotional distress, sexual function, relationship satisfaction, spirituality, menopause symptoms, and knowledge. Satisfaction with the program and the use of medical care also were assessed.RESULTS:Both groups of women improved significantly in knowledge, decreased in distress, and had decreased hot flashes. Sexually active women had improved sexual function at 6‐month follow‐up but not at 1 year. However, peer counseling had little incremental benefit over the telephone counseling.CONCLUSIONS:The SPIRIT program was rated very useful by 66% of women. Outcomes justify continued use of the workbook and further research to optimize the impact of peer counseling. Cancer 2011;. © 2011 American Cancer Society.

The Sisters Network: A National African American Breast Cancer Survivor Advocacy Organization

Founded in 1994 by an African American woman who was diagnosed with breast cancer only a few months earlier, the Sisters Network advocacy organization today has nearly 3,000 members in 35 chapters throughout the country.

Using a Delphi Technique to Determine the Needs of African American Breast Cancer Survivors

A qualitative study was designed in collaboration with the Sisters Network, Inc., the only nonprofit national Black breast cancer support group, to identify the needs of Black breast cancer survivors. This article describes the use of the Delphi technique as a methodological tool for listening to culturally different speakers and building consensus among members of a racial minority group regarding their most important needs as breast cancer survivors. The specific objective of the study was to determine if the seldom-used Delphi technique could serve as a tool for deriving consensus on a significant health care concern among members of a racial minority group. Sixty-two survivors from different geographical regions of the United States participated in the study. The Delphi technique proved to be a useful qualitative method for encouraging discussion among a group of women with a vested interest in a specific health issue.

Centered on Breast Cancer

A relationship between early menarche in girls and later development of breast cancer has long been observed. Some environmental factors, such as diet and exposure to endocrine disruptors and other chemicals, could affect children’s timing and pace of puberty and development. This leads to the question of whether exposure to these agents may also lead to breast cancer later in life. That is the scientific premise for the establishment of the Breast Cancer and the Environment Research Centers (BCERCs), which presented results of ongoing studies at their third annual meeting on 2–3 November 2006. The centers are co-funded by the NIEHS and the National Cancer Institute (NCI) Epidemiology and Genetics Research Program. They work together to integrate community outreach and two lines of research: 1) basic biology of the mammary gland and its development using animal models, and 2) epidemiological studies of how environmental factors affect puberty in girls. Four centers were established across the nation: the Fox Chase Cancer Center in Philadelphia (collaborating with Mount Sinai School of Medicine in New York and the University of Alabama at Birmingham), the University of Cincinnati in Ohio (collaborating with Cincinnati Children’s Hospital Medical Center), the University of California, San Francisco (collaborating with numerous partners including Lawrence Berkeley National Laboratory), and Michigan State University in East Lansing. “Using a transdisciplinary scientific approach, the centers are able to investigate possible windows of susceptibility during pubertal development more comprehensively and on a larger scale,” said Shannon Lynch, a program analyst at the NCI. The BCERCs’ ability to work closely together, share resources, compare findings, and establish common research protocols is especially important in epidemiological studies. With each center recruiting a number of girls from diverse racial/ ethnic, geographical, and socioeconomic backgrounds, the data that are ultimately generated should be more robust due to a greater number of samples that are more representative of different populations.