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Disparities in breast cancer care and research: report from a Breast Cancer Research Foundation sponsored workshop, 9–10 October 2014

Disparities in breast cancer care and research: report from a Breast Cancer Research Foundation... www.nature.com/npjbcancer All rights reserved 2374-4677/15 REVIEW ARTICLE OPEN Disparities in breast cancer care and research: report from a Breast Cancer Research Foundation sponsored workshop, 9–10 October 2014 1 2 3,4 5 6 7 Beverly Canin , Karen M Freund , Patricia A Ganz , Dawn L Hershman and Electra D Paskett on behalf of the workshop participants The purpose of this workshop was to bring together diverse stakeholders from the breast cancer research community to discuss critical issues related to disparities in breast cancer care and to identify potential strategies for reducing disparities and inequities in care through research. The workshop format included a series of formal content presentations, participation in break out groups that focused on specific topics highlighted in the content presentations, reporting back of findings and a facilitated discussion that focused on shaping a research agenda. The workshop members concluded that numerous groups of women are at increased risk for disparities in breast cancer care: many patients and survivors suffer disproportionately from inadequate access to high-quality diagnosis and treatment, resulting in more frequent and severe adverse outcomes from the disease. Research on breast cancer disparities provides a major opportunity for reducing the burden of breast cancer. Thus, it is important for the Breast Cancer Research Foundation and other research funders to consider how to best promote research focused on ensuring breast cancer health equity. npj Breast Cancer (2015) 1, 15013; doi:10.1038/npjbcancer.2015.13; published online 14 October 2015 INTRODUCTION AND PURPOSE OF WORKSHOP higher than the rate for white women. (Figure 3) This alarming information galvanized community stakeholders from health care, At the January 2014 meeting of the Breast Cancer Research public health, advocacy, and the government to form the Foundation (BCRF) scientific advisory board, members noted that Metropolitan Chicago Breast Cancer Task Force. Dr Ferrans disparities in breast cancer care and outcomes were a growing explained the process of building the local task force, identifying concern (Figures 1 and 2). Breast cancer research focused the needs and forming recommendations that could have a on decreasing risk, reducing morbidity, and increasing cures is measureable impact on breast cancer disparities. She shared the mission of BCRF—but must include a focus on disparities successes and challenges in implementing recommendations, (identification of issues and solutions) to be fully comprehensive such as lack of financial resources to support program recom- and effective. As a result, a working group of BCRF investigators was mendations, lack of access to quality mammography, and cultural convened to discuss this issue and think about strategies to identify barriers to screening and treatment. She emphasized the relevant research opportunities. Among the topics considered for importance of prior research to show a compelling need (shining discussion were the widening gaps in survival, even while there has the light on the problem making it impossible to ignore), of been extraordinary progress in basic, translational, and clinical making the community and legislature aware of the need through research yielding more effective new treatments. To address these widespread media coverage and advocate involvement, and of concerns, a subsequent workshop was held, bringing together creating incentives for health-care providers to participate. Major researchers, clinicians, public policy professionals, community outcomes of the effort were passage of the Illinois Reducing leaders, and patient advocates, to identify opportunities and Breast Cancer Disparities Act, creation of the Breast Cancer Quality challenges in the conduct of research focused on disparities in Consortium to improve mammography quality and expansion of breast cancer care and outcomes. This report is a summary of that the Illinois Breast and Cervical Cancer Program to cover all workshop. uninsured women in Illinois, for screening, diagnosis, and treatment. KEYNOTE ADDRESS Dr Carol Ferrans, of the University of Illinois at Chicago, described SUMMARY OF CORE PRESENTATIONS an effort by multiple stakeholders in Chicago to address the Cross-cutting themes and special populations worsening gap in survival outcomes between black women and white women with breast cancer. From 1980 until 1996, Chicago Providing an overview of themes and challenges in addressing mortality rates for black and white women with breast cancer disparities in ethnic minority and underserved communities, were about the same, but by the late 1990s a widening gap was Dr Roshan Bastani, of the Fielding School of Public Health at emerging. By 2005, the mortality rate for black women was 116% UCLA, began with commonly understood definitions of health 1 2 3 Breast Cancer Advocate, New York, NY, USA; Tufts Medical Center and Tufts University School of Medicine, Boston, MA, USA; UCLA Schools of Medicine and Public Health, Los Angeles, CA, USA; Center for Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center, University of California, Los Angeles, Los Angeles, CA, USA; 5 6 Columbia University, New York, NY, USA and Ohio State University, Columbus, OH, USA. Correspondence: PA Ganz (pganz@mednet.ucla.edu) Affiliations of writing committee members and all workshop participants are listed before Acknowledgments. Received 23 August 2015; accepted 7 September 2015 © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited Disparities in breast cancer care and research B Canin et al 100 disparities and health inequities. A health disparity is generally interpreted as a difference in the presence of a disease, in health outcomes, or in access to care among population groups. The 5 term health inequity is increasingly being applied to describe 6 differences or disparities in health status and health outcomes that are unnecessary, avoidable, and also considered unfair and unjust. Therefore, health equity is the absence of unfair and avoidable or remediable differences in health outcomes. Healthy People 2020 defines health equity as attainment of the highest level of health for all people (http://www.healthypeople.gov/ 2020/about/foundation-health-measures/Disparities). Dr Bastani focused on the current framework of disparities research and 0 123456789 10 the limitations in how disparities research is funded and Years Since Diagnosis conducted, which impede a true understanding of community need and impacts on the point of service, care, and health-care 1 Non-hispanic white 2 Hispanic white 3 African American 4 Native American 5 Asian American 6 Native Pacific Islander outcomes. In order to achieve health equity, Bastani suggested that the language and culture of disparities research must change. Figure 1. Female breast cancer survival by race/ethnicity, from SEER Disparities research must be conducted in a community-based data, 1995–2010. participatory model involving transdisciplinary teams (representa- tives from basic, clinical, psychosocial sciences, public health, and policy) and representation from the community. It must first take into consideration community needs and priorities. Also, she said, identifying similarities in disparities across populations and devising solutions that apply to multiple disadvantaged groups is more sustainable and thus more likely to yield population-wide impact. Special issues in urban, poor, and minority communities Dr Nina Bickell, from the Mount Sinai Center for Health Equity and Community Engaged Research, highlighted access to high-quality cancer care and health insurance as the predominant drivers of disparities in breast cancer care and outcomes in poor urban communities. Important factors that can improve clinical care in low-resource settings are information sharing among the clinical care team, tracking of follow-up, patient-centered culture, adequate systems support (organizational and administrative) at Figure 2. Incidence and mortality data from SEER 9 delay-adjusted rates 1975–2011. the point of care, and flexibility of the health-care workforce to Figure 3. Age-adjusted breast cancer mortality rates in Chicago, adapted from ref. 1. npj Breast Cancer (2015) 15013 © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited % Disparities in breast cancer care and research B Canin et al work around system limitations. Challenges include ensuring Oncology, the American Association for Cancer Research, the access to advanced cancer care, such as palliative and end-of-life National Cancer Institute and the American Cancer Society in care, and access to clinical trials. February 2014. The goals and objectives of that meeting were to discuss the state of the science on health disparities to inform a joint statement from these organizations which would make key Disparities in breast cancer care in rural communities recommendations for research priorities and for improving how BCRF investigator, Dr Electra Paskett, from the Ohio State disparities research is conducted and disseminated. Dr Polite University Comprehensive Cancer Center, cited certain statistics described the specific areas that were discussed including many related to rural populations: 72% of the geographical US is rural; important research areas that need further development and 15% of the population resides in rural areas; 2.8 million cancer implementation. A report from that effort will be forthcoming, and survivors live in rural areas of the US. She noted that rural should be very valuable to the research community in moving the communities are diverse in both geography and racial/ethnic field forward. Many of the topics identified for discussion in this populations. These communities are understudied and face a workshop overlap with those discussed by those who attended variety of disparities in health care due to geographical isolation the think tank described by Dr Polite. and barriers imposed by cultural beliefs, lack of education, lower economic status, and co-morbidities. Rural women with breast cancer face barriers at all points of the cancer care continuum WORK GROUP DISCUSSIONS from screening to survivorship and end-of-life care are less likely Community-based research strategies to receive standard of care or have adequate psychosocial This work group identified several strategies for addressing breast support, and are more likely to suffer from depression and have cancer disparities. Although a Community-Based Participatory poorer quality of life after breast cancer. Treatment decisions are Research (CPBR) strategy is optimal for assuring community buy-in often made based on transportation and accessibility rather than and having a sustainable intervention, accomplishing full partici- medical need. Tailored interventions are needed for this popula- pation is not always possible. A more feasible approach is to use a tion to improve access to screening and prevention counseling multilevel strategy that involves building relationships in the and to improve the patient’s experience with treatment, follow-up, community and creating infrastructure to conduct research and survivorship. that addresses community needs, especially in the populations that suffer disparities. Policy makers need to be convinced that Disparities and challenges in meeting the psychosocial needs of addressing disparities is a good investment—economically as well patients with breast cancer as from the human perspective. Systems and structures that can BCRF investigator, Dr Annette Stanton, from the Department of help deliver and sustain the interventions, e.g., federally qualified Psychology at UCLA, noted that disparities in the impact and health centers, health departments, etc., must also be targeted, effective management of psychosocial concerns in breast cancer before following with interventions for individual patients patients are not well studied and that much more work needs to be (e.g., assess risk and screening). Outcome aims for the reduction carried out. Research regarding the intersecting influences of of disparities cannot be limited to mortality due to time needed to ethnicity/race, socioeconomic status, and cancer variables (e.g., accrue results. Other important outcome aims include use of disease stage) on psychosocial outcomes is needed. Disparities in mammography, time to notification of abnormal test results, and psychosocial outcomes exist between Latina American breast cancer time to resolution/diagnosis/treatment. Although using CPBR is survivors and non-Latina counterparts independent of economic ideal, it takes time to build trust within the community, especially 2,3 status. Understanding of the contributors to such disparities, as as certain elements inherent within research often create delays well as the determinants of positive psychosocial outcomes, is and problems—e.g., IRB’s, control groups, and consent forms. One necessary to inform targeted and culturally tailored interventions. way to assist with building trust and gaining entrée into communities to address disparities is to use trusted community Disparities in care experienced by older patients with breast members such as community health workers or lay patient cancer navigators. BCRF investigator, Dr Arti Hurria, from the City of Hope Cancer Center, noted that older patients have poorer outcomes than Disparities in clinical care and clinical trials younger patients for a variety of reasons. Older patients are a very Five areas were identified where clinical care provision and clinical heterogeneous population regarding overall health and physiolo- trial design could have a major impact in reducing breast cancer gical status even before being diagnosed with breast cancer. They disparities. are rarely included in clinical trials, often due to co-morbidities; consequently, many breast cancer therapies have not been (1) Guideline concordant care. Data from a number of sources adequately studied in this group. Efforts to identify challenges suggest that women from minority communities are less likely to and opportunities in geriatric oncology are ongoing as part of a 4–6 receive guideline recommended care. The group identified the collaborative geriatric oncology consortium Dr Hurria is leading. need for monitoring of specific quality of care metrics in breast She presented a model for clinical trials in both the metastatic and cancer care. Monitoring serves to specifically identify populations, adjuvant settings to test cancer drugs in older patients in order to locations, and processes of care in need of intervention as well as better understand their side effects and to expand data collection to provide the impetus for intervention. Consensus development to capture the characteristics of this population. This is a serious of a group of metrics that balance feasibility and utility to address need as the advances made in the laboratory and clinic cannot be gaps in care is needed. extended to older patients with breast cancer until they are adequately evaluated in this target population. (2) Eligibility expansion to include those with common medical co- morbidities. This strategy builds upon strategies for inclusion of Synopsis of findings from a collaborative think tank on health elderly into clinical trials. Co-morbidities are one of the major disparities reasons of ineligibility for clinical trials by minority groups and the lack of diversity in clinical trial populations. Lower income is Dr Blase Polite, from the University of Chicago, gave the final presentation, which was a synopsis of findings from a meeting also a barrier. To more rapidly expand data on the effectiveness attended by representatives from the American Society of Clinical of new therapies to underserved populations, processes of © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited npj Breast Cancer (2015) 15013 Disparities in breast cancer care and research B Canin et al concurrently expanding cohort eligibility, or enrichment or (2) Prospectively collect functional status of older adults enrolling in extended trial design for common stable co-morbidities (including trials. This includes measures of functional (as opposed to diabetes, hypertension, coronary artery disease, and chronic renal chronological) age, which is captured by items included in a disease), could rapidly address disparities and facilitate more rapid geriatric assessment. This information could help researchers and dissemination of findings to a broader patient spectrum. clinicians look past chronological age to ‘functional age’ when tailoring a treatment plan to an individual. Also, tools are needed (3) Simplification of therapeutic protocols. The increased complex- to facilitate decision-making and incorporate preferences of older ity of clinical cancer care results in lower adherence among those adults in the care plan, taking into account both the short- and with low health literacy and other barriers including insurance long-term side effects of cancer therapy. instability, housing, and income instability, all of which put completion of therapy at risk. Explicit National Institutes of Health (3) Understand how cancer and cancer therapy impact the health and funder goals of reduced complexity in new protocols may and well-being of older breast cancer survivors. With improve- ments in screening and therapy, the number of older cancer serve to reduce disparities in treatment adherence. survivors is growing. Studies of the short- and long-term impact of (4) Coordination of care between health-care providers. Bickell’s cancer and cancer treatment on overall health, function, and 10,11 findings and the growing literature within and outside of cognition of older adults are needed in order to develop cancer have demonstrated quality gaps that accompany the interventions to promote health and well-being after treatment. increasingly more complex care, whether inpatient or outpatient (4) Facilitate physical access to care for older adults with breast care, primary, or specialty care. Evaluation and dissemination of 13,14 cancer. Patients with limited mobility and/or social support will models of coordination are needed. Stanton’s findings and experience challenges traveling long distances to receive treat- others of the large unmet psychosocial needs of underserved ment. Factors contributing to patient and caregiver burden that populations speaks to the explicit need for these coordinated models to include behavioral health. may impact access to care must be considered. The direct and indirect cost of caregiving also needs to be accounted for. (5) Implementation and dissemination. Implementation research is needed to determine best methods to disseminate known effective (5) Engender cross-talk between geriatrics and oncology. The strategies to improve quality of care, such as patient navigation. majority of patients with cancer are older adults, yet very few— Broad stakeholder engagement is needed to develop these five if any—geriatric principles are included in oncology training. targeted areas of improvement in clinical trials enrollment among Furthermore, most geriatricians and primary care providers have minority and underserved populations, and for improved coordina- limited education in oncology care. This represents an opportunity tion and quality of clinical care. For example, the pharmaceutical for transdisciplinary education to improve the quality of cancer industry alongwiththe Food andDrugAdministrationand cancer care for older adults. trial groups need to jointly develop systems to promote protocol simplification and expanded cohort eligibility. Providers, accountable Disparities in psychosocial services and survivorship care care organizations, and insurers are currently well motivated to work Future research on disparities in psychosocial services and together to implement care coordination as well as quality metrics survivorship care needs to consider access and social–cultural and methods to adopt interventions shown to address disparities. barriers. One way to begin to address these factors is to collect data on psychosocial factors, e.g., depression, social isolation/ Breast cancer and aging loneliness, and fatalism. This would facilitate research being Significant age-related disparities in breast cancer care and carried out with patients and could be associated with earlier outcomes were reviewed. From 1990 to 2007, breast cancer clinical intervention when a problem is first identified; thus, death rates decreased by 2.5% per year in women age 20–49 adding to the cost-effectiveness of this strategy. Treatment years, but only 1.1% per year in women age ⩾ 75 years. As breast modalities for psychosocial problems need further development. Things to consider when developing these modalities include who cancer is a disease associated with aging and the number of older is and is not participating in treatment, allowing interventions to adults with breast cancer is expected to greatly increase over the be tailored or adapted, defining protective factors, as well as risk next decades, this age-related disparity in breast cancer outcomes is of great concern. Five targets were identified to improve factors, testing interventions with diverse populations, keeping in evidence-based research in older adults, with the goal of mind the need to maximize adherence to any intervention subsequently decreasing disparities. implemented, and involving the community in development. Additional questions apply to underserved populations when (1) Improve evidence-based research in older adults with breast considering the development of treatment interventions—for cancer. In particular, there is a need to bolster the enrollment of example, is there an extra burden of psychosocial risk factors in older adults in phase III studies, which define the standard of care. underserved populations and in what diverse cultural contexts As older adults have been under-represented in breast cancer might these risk factors be more likely to occur causing increased clinical trials, particularly adjuvant and Food and Drug Adminis- risk for adverse events. Finally, to realize the benefits of effective tration registration trials, a several-pronged approach for filling interventions, patients need to be invited to participate, perhaps this knowledge gap is recommended, including recommendations by discussion of the benefits of treatment to themselves, their from the Institute of Medicine and Cancer and Aging Research families, and their communities. Group. Studies are needed to pinpoint the enrollment barriers for older adults and to find ways to overcome these barriers. Just SHAPING A RESEARCH AGENDA: FROM CELLS TO SOCIETY as researchers design a plan that includes recruitment of women and minorities, there should be a similar plan to enroll enough In the final session of the workshop, BCRF investigators facilitated older adults in trials for the age distribution on the study to mimic a summary discussion that wove together themes and content that of the disease. In pediatric medicine, a patent extension is that was heard across the various work groups, with a focus that employed if the drug is studied in children. A similar principle extended from the biological to the societal. Biological differences in host factors can contribute to breast cancer disparities. could apply to older adults, with policy makers and key stakeholders integrally involved in the effort. Conditions associated with poorer cancer outcomes, including npj Breast Cancer (2015) 15013 © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited Disparities in breast cancer care and research B Canin et al Table 1. Cross-cutting research strategies to reduce breast cancer disparities Tumor biology and host factors Promote interdisciplinary research to expand the approach of the science of health disparities; e.g., the biology of obesity, an important risk factor that is prevalent in low-income populations. Use clinical trial biospecimens for correlative studies that can examine host factor biology; e.g., chronic inflammation and its role in cancer progression. Identify biomarkers and biological measures associated with socioeconomic disadvantage; e.g., cortisol levels as a measure of stress. Develop a set of standardized tools for measurements of cancer disparities, i.e., questionnaire, biological and outcomes measures. Integrate data on both biological and behavioral assessment of the individual. Identify methods to assess the whole person with both qualitative measures and biological measures. Develop strategies for the use of inevitably large amounts of data from personal genetic tests that will become more common in the next 5–10 years. Individual level: whole -person care Develop multidisciplinary assessment to address whole-person care Include perspectives of primary care providers, other health-care providers. Address family history. Recognize cultural barriers in talking about breast cancer/breast health. Acknowledge barriers due to maternal and caretaking roles; e.g., mother takes care of others first, her health comes second. Must take a life course perspective, and address opportunities for prevention and intervention across childhood, adolescence, young adult, middle age, and older ages. Develop primary and secondary prevention strategies Learn from cardiovascular prevention experience. Develop implementation strategies for evidence-based approaches to behavioral modifiers; e.g., exercise and diet. Develop preventive strategies that address exposures beginning in utero. Improve adherence to age appropriate mammographic screening. Develop strategies for physician reinforcement of preventive recommendations. Develop outcomes that address the whole person: treatment, follow ups Include multidisciplinary care team so that psychosocial, behavior, and functional outcomes included. Include outcomes of impact of cancer and care on members. Social/environmental context Understand the barriers to accessing the medical care system by vulnerable populations Fear and trust issues. Safety/stress issues; lack of access to safe environment. Develop and assess community and environmental interventions. Develop partnerships/alliances with local programs. Advocate for legislation to reduce exposures, and policies to provide incentive and support for healthy lifestyle choices, incentivize healthy choices. Develop workplace/church interventions/incentives, with the goal of changing the environment at work (in the community) leading to changes in behavior at home. Develop implementation strategies for environmental exposures that move from the workplace to the community Incentivize smaller companies with bottom line on investment in healthy lifestyles to improve productivity and reduce loss of work hours. Institutional considerations Develop a multi-factorial perspective, including the integrated attention of many disciplines both within and outside of the health sector. Transdisciplinary multilevel research is particularly important for addressing breast cancer disparities in communities. Focus on the lack of or insufficient health-care coverage and low socioeconomic status (e.g., as measured by income, education level, and occupation) as one of the strongest factors in disparities. These factors influence the incidence, prevalence, mortality, and burden of the disease. Evaluate all the resources needed to cover costs of breast cancer detection, treatment, and long-term care. Measure contrasting rates across populations, such as poverty, education, and racial/ethnic patterns, for planning and evaluating intervention programs. Value and support community engagement in institutional interventions. This is now a key consideration for research funding by foundations and agencies. Build upon community assets when developing interventions, e.g., cultural competence, committed community leadership, coordinate, and build on preexisting organizational structure. Develop specific interventions to identify and improve organizational and structural characteristics that contribute to cancer disparities in institutions serving primarily vulnerable populations is paramount. Develop strategies that attend to education and knowledge of the patients and/or family members and their role as a resource during breast cancer detection, treatment, and long-term care. Policy issues Implementation research on methods to adopt of evidence-based recommendations. Measure and report the impact of disparities on public health and the ongoing costs of inaction, formatted with the language of policy makers. Change the language from disparities to ‘achieving health equities’, with a focus on positive aspects of achieving health equity in both health and economic terms. Focus new initiatives on breast cancer risk reduction Address women’s health/family life issues Health promotion messaging. Ethnic communities, cultural norms, and women’s role. Identify similarities between rural and urban challenges to access. May need to focus on other community priorities first. © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited npj Breast Cancer (2015) 15013 Disparities in breast cancer care and research B Canin et al Table 1. (Continued) Operationalize Institute of Medicine report recommendations regarding quality of cancer care Work with NIH and professional societies to implement these recommendations. Communicate across social science, clinical medicine, and basic research. Prepare to respond and measure the imminent challenges Medicaid will face with the Affordable Care Act Develop cancer quality metrics at the system level. Discuss how to address health-care networks that do not accept Medicaid yet will serve large numbers of breast cancer patients at risk for inequities in care. obesity, stress, and chronic inflammation, are highly prevalent in Peter Greenwald, MD, DrPH, National Cancer Institute, National lower socioeconomic status populations. Their impact on devel- Institutes of Health, Bethesda, MD opment and progression of cancer are critical areas to elucidate. Dawn L Hershman, MD, MS, Columbia University, New York, NY The interactions among biology, environment, and behavior along Clifford Hudis, MD, Memorial Sloan Cancer Center, New York, NY Arti Hurria, MD, City of Hope, Duarte, CA with their differential impact on cancer outcomes pose important Elena Martinez, PhD, University of California, San Diego, areas to be further researched. The inevitable large amounts of personalized data from genetic testing, merged with clinical La Jolla, CA Jewel Mullen, MD, MPH, MPA, Department of Public Health, CT electronic medical record and environmental and administrative Electra D Paskett, PhD, MSPH, Ohio State University, Columbus, OH databases, offer tremendous opportunities to examine promoters Edith A Perez, MD, Mayo Clinic, Jacksonville, FL of carcinogenesis and areas to intervene to reduce disparities in Blase Polite, MD, University of Chicago Medicine, Chicago, IL cancer outcomes. Julia H Rowland, PhD, National Cancer Institute, Cancer Control In Table 1, we summarize the strategies that were identified in and Populations Sciences each domain that was considered. As can be seen, there is much Patricia Spears, Advocate, North Carolina to be done, across the continuum from the most basic biology to Annette L Stanton, PhD, University of California, Los Angeles, CA policy. A major theme that permeated the discussion was the Sandra M Swain, MD, MedStar Washington Hospital Center and importance of acknowledging the high societal cost of disparities Georgetown University, Washington, DC in breast cancer care. If this is not a priority for all research Mary Beth Terry, PhD, Columbia University, Mailman School of scientists, it will not be effectively addressed. Public Health, New York, NY Beti Thompson, PhD, Fred Hutchinson Cancer Research Center, CONCLUSIONS Seattle, WA BCRF staff: Ms Margaret Mastrianni and Margaret Flowers, PhD Breast cancer disparities are a major concern for many groups, including racial/ethnic minority, older, rural, less educated, the underserved, those with cultural barriers, and breast cancer survivors who have ongoing medical or psychosocial needs. Many ACKNOWLEDGMENTS cancer patients and survivors suffer disproportionately from This workshop was supported by the Breast Cancer Research Foundation. inadequate access to high-quality diagnosis and treatment and more frequent and severe adverse outcomes from the disease. Basic and implementation science research and the application of COMPETING INTERESTS evidence-based research results on breast cancer disparities are The authors declare no conflict of interest. essential to achieve good health of at-risk communities and for our society as a whole. Future research will benefit from involvement of transdisciplinary teams including academic, public REFERENCES health, and community leaders, and delineating paths through 1 Ansell D, Grabler P, Whitman S, Ferrans C, Burgess-Bishop J, Murray LR et al. A which the research can be translated into wide-scale public community effort to reduce the black/white breast cancer mortality disparity in benefit. Thus, it is important for BCRF and other funders of Chicago. Cancer Cause Control 2009; 20:1681–1688. research to consider how they can best promote research that is 2 Yanez B, Thompson EH, Stanton AL. Quality of life among Latina breast cancer patients: a systematic review of the literature. J Cancer Surviv 2011; 5: focused on eliminating breast cancer health disparities. 191–207. 3 Luckett T, Goldstein D, Butow PN, Gebski V, Aldridge LJ, McGrane J et al. Psy- chological morbidity and quality of life of ethnic minority patients with cancer: a WORKSHOP ATTENDEES systematic review and meta-analysis. Lancet Oncol 2011; 12: 1240–1248. Roshan Bastani, PhD, Fielding School of Public Health, University 4 Freedman RA, He Y, Winer EP, Keating NL. Racial/ethnic differences in receipt of California, Los Angeles, CA of timely adjuvant therapy for older women with breast cancer: are delays Nina Bickell, MD, Mount Sinai Hospital, New York, NY influenced by the hospitals where patients obtain surgical care? Health Serv Res Beverly Canin, Breast Cancer Advocate, New York, NY 2013; 48: 1669–1683. Graham A Colditz, MD, DrPH, FAFPHM, Washington University, 5 Berz JPB, Johnston K, Backus B, Doros G, Rose AJ, Pierre S et al. The influence of St Louis, MO black race on treatment and mortality for early-stage breast cancer. Med Care 2009; 47:986–992. Elise D Cook, MD, MS, University of Texas, MD Anderson Cancer 6 Crowley MM, McCoy ME, Bak SM, Caron SE, Ko NY, Kachnic LA et al. Challenges in Center, Houston, TX the delivery of quality breast cancer care: initiation of adjuvant hormone therapy Carol Estwing Ferrans, PhD, RN, FAAN, University of Illinois at at an urban safety net hospital. J Oncol Pract 2014; 10:e107–e112. Chicago, Chicago, IL 7 Hurria A, Patel SK, Mortimer J, Luu T, Somlo G, Katheria V et al. The effect of Karen M Freund, MD MPH, Tufts Medical Center and Tufts aromatase inhibition on the cognitive function of older patients with University School of Medicine, Boston, MA breast cancer. Clin Breast Cancer 2014; 14: 132–140. Patricia A Ganz, MD, UCLA Schools of Medicine and Public Health, 8 Langford AT, Resnicow K, Dimond EP, Denicoff AM, Germain DS, McCaskill- Los Angeles, CA Stevens W et al. Racial/ethnic differences in clinical trial enrollment, refusal Sarah Gehlert, PhD, Washington University, St Louis, MO rates, ineligibility, and reasons for decline among patients at sites in the npj Breast Cancer (2015) 15013 © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited Disparities in breast cancer care and research B Canin et al National Cancer Institute's Community Cancer Centers Program. Cancer 2014; 16 Freund KM, Battaglia TA, Calhoun E, Darnell JS, Dudley DJ, Fiscella K et al. Impact 120: 877–884. of patient navigation on timely cancer care: The Patient Navigation Research 9 Unger JM, Hershman DL, Albain KS, Moinpour CM, Petersen JA, Burg K et al. Program. J Natl Cancer Inst 2014; 106; dju115; doi: 10.1093/jnci/dju115. Patient Income Level and Cancer Clinical Trial Participation. J Clin Oncol. 2013; 31: 17 Smith BD, Jiang J, McLaughlin SS, Hurria A, Smith GL, Giordano SH et al. Improvement in breast cancer outcomes over time: are older women 536–542. 10 Bickell NA, McEvoy MD. Physicians' reasons for failing to deliver effective breast missing out? J Clin Oncol 2011; 29: 4647–4653. 18 Talarico L, Chen G, Pazdur R. Enrollment of elderly patients in clinical trials for cancer care: a framework for underuse. Med Care 2003; 41:442–446. cancer drug registration: A 7-year experience by the US Food and Drug Admin- 11 Bickell NA, Shastri K, Fei K, Oluwole S, Godfrey H, Hiotis K et al. A tracking and istration. J Clin Oncol 2004; 22: 4626–4631. feedback registry to reduce racial disparities in breast cancer care. J Natl Cancer 19 Levit L, Balogh E, Nass S, Ganz PA. Delivering High-Quality Cancer Care: Charting a Inst 2008; 100: 1717–1723. New Course for a System in Crisis. The National Academies Press, 2013. 12 Friedman EL, Chawla N, Morris PT, Castro KM, Carrigan AC, Das IP et al. Assessing 20 Hurria A, Dale W, Mooney M, Rowland JH, Ballman KV, Cohen HJ et al. Designing the development of multidisciplinary care: experience of the National Cancer therapeutic clinical trials for older and frail adults with cancer: U13 conference Institute Community Cancer Centers Program. J Oncol Pract 2015; 11: e36–e43. recommendations. J Clin Oncol 2014; 32: 2587–2594. 13 Yanez B, Thompson E, Stanton A. Quality of life among Latina breast cancer patients: a systematic review of the literature. J Cancer Surviv 2011; 5:191–207. 14 Yanez B, Stanton AL, Maly RC. Breast cancer treatment decision making among This work is licensed under a Creative Commons Attribution 4.0 Latinas and non-Latina Whites: a communication model predicting decisional International License. The images or other third party material in this outcomes and quality of life. Health Psychol 2012; 31:552–561. article are included in the article’s Creative Commons license, unless indicated 15 O’Hea EL, Monahan BR, Cutillo A, Person SD, Grissom G, Boudreaux ED. Predictors otherwise in the credit line; if the material is not included under the Creative Commons of psychological distress and interest in mental health services in individuals license, users will need to obtain permission from the license holder to reproduce the with cancer. J Health Psychol; advance online publication, 9 September 2014; material. To view a copy of this license, visit http://creativecommons.org/licenses/ doi: 10.1177/1359105314547752. by/4.0/ © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited npj Breast Cancer (2015) 15013 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png npj Breast Cancer Springer Journals

Disparities in breast cancer care and research: report from a Breast Cancer Research Foundation sponsored workshop, 9–10 October 2014

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Abstract

www.nature.com/npjbcancer All rights reserved 2374-4677/15 REVIEW ARTICLE OPEN Disparities in breast cancer care and research: report from a Breast Cancer Research Foundation sponsored workshop, 9–10 October 2014 1 2 3,4 5 6 7 Beverly Canin , Karen M Freund , Patricia A Ganz , Dawn L Hershman and Electra D Paskett on behalf of the workshop participants The purpose of this workshop was to bring together diverse stakeholders from the breast cancer research community to discuss critical issues related to disparities in breast cancer care and to identify potential strategies for reducing disparities and inequities in care through research. The workshop format included a series of formal content presentations, participation in break out groups that focused on specific topics highlighted in the content presentations, reporting back of findings and a facilitated discussion that focused on shaping a research agenda. The workshop members concluded that numerous groups of women are at increased risk for disparities in breast cancer care: many patients and survivors suffer disproportionately from inadequate access to high-quality diagnosis and treatment, resulting in more frequent and severe adverse outcomes from the disease. Research on breast cancer disparities provides a major opportunity for reducing the burden of breast cancer. Thus, it is important for the Breast Cancer Research Foundation and other research funders to consider how to best promote research focused on ensuring breast cancer health equity. npj Breast Cancer (2015) 1, 15013; doi:10.1038/npjbcancer.2015.13; published online 14 October 2015 INTRODUCTION AND PURPOSE OF WORKSHOP higher than the rate for white women. (Figure 3) This alarming information galvanized community stakeholders from health care, At the January 2014 meeting of the Breast Cancer Research public health, advocacy, and the government to form the Foundation (BCRF) scientific advisory board, members noted that Metropolitan Chicago Breast Cancer Task Force. Dr Ferrans disparities in breast cancer care and outcomes were a growing explained the process of building the local task force, identifying concern (Figures 1 and 2). Breast cancer research focused the needs and forming recommendations that could have a on decreasing risk, reducing morbidity, and increasing cures is measureable impact on breast cancer disparities. She shared the mission of BCRF—but must include a focus on disparities successes and challenges in implementing recommendations, (identification of issues and solutions) to be fully comprehensive such as lack of financial resources to support program recom- and effective. As a result, a working group of BCRF investigators was mendations, lack of access to quality mammography, and cultural convened to discuss this issue and think about strategies to identify barriers to screening and treatment. She emphasized the relevant research opportunities. Among the topics considered for importance of prior research to show a compelling need (shining discussion were the widening gaps in survival, even while there has the light on the problem making it impossible to ignore), of been extraordinary progress in basic, translational, and clinical making the community and legislature aware of the need through research yielding more effective new treatments. To address these widespread media coverage and advocate involvement, and of concerns, a subsequent workshop was held, bringing together creating incentives for health-care providers to participate. Major researchers, clinicians, public policy professionals, community outcomes of the effort were passage of the Illinois Reducing leaders, and patient advocates, to identify opportunities and Breast Cancer Disparities Act, creation of the Breast Cancer Quality challenges in the conduct of research focused on disparities in Consortium to improve mammography quality and expansion of breast cancer care and outcomes. This report is a summary of that the Illinois Breast and Cervical Cancer Program to cover all workshop. uninsured women in Illinois, for screening, diagnosis, and treatment. KEYNOTE ADDRESS Dr Carol Ferrans, of the University of Illinois at Chicago, described SUMMARY OF CORE PRESENTATIONS an effort by multiple stakeholders in Chicago to address the Cross-cutting themes and special populations worsening gap in survival outcomes between black women and white women with breast cancer. From 1980 until 1996, Chicago Providing an overview of themes and challenges in addressing mortality rates for black and white women with breast cancer disparities in ethnic minority and underserved communities, were about the same, but by the late 1990s a widening gap was Dr Roshan Bastani, of the Fielding School of Public Health at emerging. By 2005, the mortality rate for black women was 116% UCLA, began with commonly understood definitions of health 1 2 3 Breast Cancer Advocate, New York, NY, USA; Tufts Medical Center and Tufts University School of Medicine, Boston, MA, USA; UCLA Schools of Medicine and Public Health, Los Angeles, CA, USA; Center for Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center, University of California, Los Angeles, Los Angeles, CA, USA; 5 6 Columbia University, New York, NY, USA and Ohio State University, Columbus, OH, USA. Correspondence: PA Ganz (pganz@mednet.ucla.edu) Affiliations of writing committee members and all workshop participants are listed before Acknowledgments. Received 23 August 2015; accepted 7 September 2015 © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited Disparities in breast cancer care and research B Canin et al 100 disparities and health inequities. A health disparity is generally interpreted as a difference in the presence of a disease, in health outcomes, or in access to care among population groups. The 5 term health inequity is increasingly being applied to describe 6 differences or disparities in health status and health outcomes that are unnecessary, avoidable, and also considered unfair and unjust. Therefore, health equity is the absence of unfair and avoidable or remediable differences in health outcomes. Healthy People 2020 defines health equity as attainment of the highest level of health for all people (http://www.healthypeople.gov/ 2020/about/foundation-health-measures/Disparities). Dr Bastani focused on the current framework of disparities research and 0 123456789 10 the limitations in how disparities research is funded and Years Since Diagnosis conducted, which impede a true understanding of community need and impacts on the point of service, care, and health-care 1 Non-hispanic white 2 Hispanic white 3 African American 4 Native American 5 Asian American 6 Native Pacific Islander outcomes. In order to achieve health equity, Bastani suggested that the language and culture of disparities research must change. Figure 1. Female breast cancer survival by race/ethnicity, from SEER Disparities research must be conducted in a community-based data, 1995–2010. participatory model involving transdisciplinary teams (representa- tives from basic, clinical, psychosocial sciences, public health, and policy) and representation from the community. It must first take into consideration community needs and priorities. Also, she said, identifying similarities in disparities across populations and devising solutions that apply to multiple disadvantaged groups is more sustainable and thus more likely to yield population-wide impact. Special issues in urban, poor, and minority communities Dr Nina Bickell, from the Mount Sinai Center for Health Equity and Community Engaged Research, highlighted access to high-quality cancer care and health insurance as the predominant drivers of disparities in breast cancer care and outcomes in poor urban communities. Important factors that can improve clinical care in low-resource settings are information sharing among the clinical care team, tracking of follow-up, patient-centered culture, adequate systems support (organizational and administrative) at Figure 2. Incidence and mortality data from SEER 9 delay-adjusted rates 1975–2011. the point of care, and flexibility of the health-care workforce to Figure 3. Age-adjusted breast cancer mortality rates in Chicago, adapted from ref. 1. npj Breast Cancer (2015) 15013 © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited % Disparities in breast cancer care and research B Canin et al work around system limitations. Challenges include ensuring Oncology, the American Association for Cancer Research, the access to advanced cancer care, such as palliative and end-of-life National Cancer Institute and the American Cancer Society in care, and access to clinical trials. February 2014. The goals and objectives of that meeting were to discuss the state of the science on health disparities to inform a joint statement from these organizations which would make key Disparities in breast cancer care in rural communities recommendations for research priorities and for improving how BCRF investigator, Dr Electra Paskett, from the Ohio State disparities research is conducted and disseminated. Dr Polite University Comprehensive Cancer Center, cited certain statistics described the specific areas that were discussed including many related to rural populations: 72% of the geographical US is rural; important research areas that need further development and 15% of the population resides in rural areas; 2.8 million cancer implementation. A report from that effort will be forthcoming, and survivors live in rural areas of the US. She noted that rural should be very valuable to the research community in moving the communities are diverse in both geography and racial/ethnic field forward. Many of the topics identified for discussion in this populations. These communities are understudied and face a workshop overlap with those discussed by those who attended variety of disparities in health care due to geographical isolation the think tank described by Dr Polite. and barriers imposed by cultural beliefs, lack of education, lower economic status, and co-morbidities. Rural women with breast cancer face barriers at all points of the cancer care continuum WORK GROUP DISCUSSIONS from screening to survivorship and end-of-life care are less likely Community-based research strategies to receive standard of care or have adequate psychosocial This work group identified several strategies for addressing breast support, and are more likely to suffer from depression and have cancer disparities. Although a Community-Based Participatory poorer quality of life after breast cancer. Treatment decisions are Research (CPBR) strategy is optimal for assuring community buy-in often made based on transportation and accessibility rather than and having a sustainable intervention, accomplishing full partici- medical need. Tailored interventions are needed for this popula- pation is not always possible. A more feasible approach is to use a tion to improve access to screening and prevention counseling multilevel strategy that involves building relationships in the and to improve the patient’s experience with treatment, follow-up, community and creating infrastructure to conduct research and survivorship. that addresses community needs, especially in the populations that suffer disparities. Policy makers need to be convinced that Disparities and challenges in meeting the psychosocial needs of addressing disparities is a good investment—economically as well patients with breast cancer as from the human perspective. Systems and structures that can BCRF investigator, Dr Annette Stanton, from the Department of help deliver and sustain the interventions, e.g., federally qualified Psychology at UCLA, noted that disparities in the impact and health centers, health departments, etc., must also be targeted, effective management of psychosocial concerns in breast cancer before following with interventions for individual patients patients are not well studied and that much more work needs to be (e.g., assess risk and screening). Outcome aims for the reduction carried out. Research regarding the intersecting influences of of disparities cannot be limited to mortality due to time needed to ethnicity/race, socioeconomic status, and cancer variables (e.g., accrue results. Other important outcome aims include use of disease stage) on psychosocial outcomes is needed. Disparities in mammography, time to notification of abnormal test results, and psychosocial outcomes exist between Latina American breast cancer time to resolution/diagnosis/treatment. Although using CPBR is survivors and non-Latina counterparts independent of economic ideal, it takes time to build trust within the community, especially 2,3 status. Understanding of the contributors to such disparities, as as certain elements inherent within research often create delays well as the determinants of positive psychosocial outcomes, is and problems—e.g., IRB’s, control groups, and consent forms. One necessary to inform targeted and culturally tailored interventions. way to assist with building trust and gaining entrée into communities to address disparities is to use trusted community Disparities in care experienced by older patients with breast members such as community health workers or lay patient cancer navigators. BCRF investigator, Dr Arti Hurria, from the City of Hope Cancer Center, noted that older patients have poorer outcomes than Disparities in clinical care and clinical trials younger patients for a variety of reasons. Older patients are a very Five areas were identified where clinical care provision and clinical heterogeneous population regarding overall health and physiolo- trial design could have a major impact in reducing breast cancer gical status even before being diagnosed with breast cancer. They disparities. are rarely included in clinical trials, often due to co-morbidities; consequently, many breast cancer therapies have not been (1) Guideline concordant care. Data from a number of sources adequately studied in this group. Efforts to identify challenges suggest that women from minority communities are less likely to and opportunities in geriatric oncology are ongoing as part of a 4–6 receive guideline recommended care. The group identified the collaborative geriatric oncology consortium Dr Hurria is leading. need for monitoring of specific quality of care metrics in breast She presented a model for clinical trials in both the metastatic and cancer care. Monitoring serves to specifically identify populations, adjuvant settings to test cancer drugs in older patients in order to locations, and processes of care in need of intervention as well as better understand their side effects and to expand data collection to provide the impetus for intervention. Consensus development to capture the characteristics of this population. This is a serious of a group of metrics that balance feasibility and utility to address need as the advances made in the laboratory and clinic cannot be gaps in care is needed. extended to older patients with breast cancer until they are adequately evaluated in this target population. (2) Eligibility expansion to include those with common medical co- morbidities. This strategy builds upon strategies for inclusion of Synopsis of findings from a collaborative think tank on health elderly into clinical trials. Co-morbidities are one of the major disparities reasons of ineligibility for clinical trials by minority groups and the lack of diversity in clinical trial populations. Lower income is Dr Blase Polite, from the University of Chicago, gave the final presentation, which was a synopsis of findings from a meeting also a barrier. To more rapidly expand data on the effectiveness attended by representatives from the American Society of Clinical of new therapies to underserved populations, processes of © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited npj Breast Cancer (2015) 15013 Disparities in breast cancer care and research B Canin et al concurrently expanding cohort eligibility, or enrichment or (2) Prospectively collect functional status of older adults enrolling in extended trial design for common stable co-morbidities (including trials. This includes measures of functional (as opposed to diabetes, hypertension, coronary artery disease, and chronic renal chronological) age, which is captured by items included in a disease), could rapidly address disparities and facilitate more rapid geriatric assessment. This information could help researchers and dissemination of findings to a broader patient spectrum. clinicians look past chronological age to ‘functional age’ when tailoring a treatment plan to an individual. Also, tools are needed (3) Simplification of therapeutic protocols. The increased complex- to facilitate decision-making and incorporate preferences of older ity of clinical cancer care results in lower adherence among those adults in the care plan, taking into account both the short- and with low health literacy and other barriers including insurance long-term side effects of cancer therapy. instability, housing, and income instability, all of which put completion of therapy at risk. Explicit National Institutes of Health (3) Understand how cancer and cancer therapy impact the health and funder goals of reduced complexity in new protocols may and well-being of older breast cancer survivors. With improve- ments in screening and therapy, the number of older cancer serve to reduce disparities in treatment adherence. survivors is growing. Studies of the short- and long-term impact of (4) Coordination of care between health-care providers. Bickell’s cancer and cancer treatment on overall health, function, and 10,11 findings and the growing literature within and outside of cognition of older adults are needed in order to develop cancer have demonstrated quality gaps that accompany the interventions to promote health and well-being after treatment. increasingly more complex care, whether inpatient or outpatient (4) Facilitate physical access to care for older adults with breast care, primary, or specialty care. Evaluation and dissemination of 13,14 cancer. Patients with limited mobility and/or social support will models of coordination are needed. Stanton’s findings and experience challenges traveling long distances to receive treat- others of the large unmet psychosocial needs of underserved ment. Factors contributing to patient and caregiver burden that populations speaks to the explicit need for these coordinated models to include behavioral health. may impact access to care must be considered. The direct and indirect cost of caregiving also needs to be accounted for. (5) Implementation and dissemination. Implementation research is needed to determine best methods to disseminate known effective (5) Engender cross-talk between geriatrics and oncology. The strategies to improve quality of care, such as patient navigation. majority of patients with cancer are older adults, yet very few— Broad stakeholder engagement is needed to develop these five if any—geriatric principles are included in oncology training. targeted areas of improvement in clinical trials enrollment among Furthermore, most geriatricians and primary care providers have minority and underserved populations, and for improved coordina- limited education in oncology care. This represents an opportunity tion and quality of clinical care. For example, the pharmaceutical for transdisciplinary education to improve the quality of cancer industry alongwiththe Food andDrugAdministrationand cancer care for older adults. trial groups need to jointly develop systems to promote protocol simplification and expanded cohort eligibility. Providers, accountable Disparities in psychosocial services and survivorship care care organizations, and insurers are currently well motivated to work Future research on disparities in psychosocial services and together to implement care coordination as well as quality metrics survivorship care needs to consider access and social–cultural and methods to adopt interventions shown to address disparities. barriers. One way to begin to address these factors is to collect data on psychosocial factors, e.g., depression, social isolation/ Breast cancer and aging loneliness, and fatalism. This would facilitate research being Significant age-related disparities in breast cancer care and carried out with patients and could be associated with earlier outcomes were reviewed. From 1990 to 2007, breast cancer clinical intervention when a problem is first identified; thus, death rates decreased by 2.5% per year in women age 20–49 adding to the cost-effectiveness of this strategy. Treatment years, but only 1.1% per year in women age ⩾ 75 years. As breast modalities for psychosocial problems need further development. Things to consider when developing these modalities include who cancer is a disease associated with aging and the number of older is and is not participating in treatment, allowing interventions to adults with breast cancer is expected to greatly increase over the be tailored or adapted, defining protective factors, as well as risk next decades, this age-related disparity in breast cancer outcomes is of great concern. Five targets were identified to improve factors, testing interventions with diverse populations, keeping in evidence-based research in older adults, with the goal of mind the need to maximize adherence to any intervention subsequently decreasing disparities. implemented, and involving the community in development. Additional questions apply to underserved populations when (1) Improve evidence-based research in older adults with breast considering the development of treatment interventions—for cancer. In particular, there is a need to bolster the enrollment of example, is there an extra burden of psychosocial risk factors in older adults in phase III studies, which define the standard of care. underserved populations and in what diverse cultural contexts As older adults have been under-represented in breast cancer might these risk factors be more likely to occur causing increased clinical trials, particularly adjuvant and Food and Drug Adminis- risk for adverse events. Finally, to realize the benefits of effective tration registration trials, a several-pronged approach for filling interventions, patients need to be invited to participate, perhaps this knowledge gap is recommended, including recommendations by discussion of the benefits of treatment to themselves, their from the Institute of Medicine and Cancer and Aging Research families, and their communities. Group. Studies are needed to pinpoint the enrollment barriers for older adults and to find ways to overcome these barriers. Just SHAPING A RESEARCH AGENDA: FROM CELLS TO SOCIETY as researchers design a plan that includes recruitment of women and minorities, there should be a similar plan to enroll enough In the final session of the workshop, BCRF investigators facilitated older adults in trials for the age distribution on the study to mimic a summary discussion that wove together themes and content that of the disease. In pediatric medicine, a patent extension is that was heard across the various work groups, with a focus that employed if the drug is studied in children. A similar principle extended from the biological to the societal. Biological differences in host factors can contribute to breast cancer disparities. could apply to older adults, with policy makers and key stakeholders integrally involved in the effort. Conditions associated with poorer cancer outcomes, including npj Breast Cancer (2015) 15013 © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited Disparities in breast cancer care and research B Canin et al Table 1. Cross-cutting research strategies to reduce breast cancer disparities Tumor biology and host factors Promote interdisciplinary research to expand the approach of the science of health disparities; e.g., the biology of obesity, an important risk factor that is prevalent in low-income populations. Use clinical trial biospecimens for correlative studies that can examine host factor biology; e.g., chronic inflammation and its role in cancer progression. Identify biomarkers and biological measures associated with socioeconomic disadvantage; e.g., cortisol levels as a measure of stress. Develop a set of standardized tools for measurements of cancer disparities, i.e., questionnaire, biological and outcomes measures. Integrate data on both biological and behavioral assessment of the individual. Identify methods to assess the whole person with both qualitative measures and biological measures. Develop strategies for the use of inevitably large amounts of data from personal genetic tests that will become more common in the next 5–10 years. Individual level: whole -person care Develop multidisciplinary assessment to address whole-person care Include perspectives of primary care providers, other health-care providers. Address family history. Recognize cultural barriers in talking about breast cancer/breast health. Acknowledge barriers due to maternal and caretaking roles; e.g., mother takes care of others first, her health comes second. Must take a life course perspective, and address opportunities for prevention and intervention across childhood, adolescence, young adult, middle age, and older ages. Develop primary and secondary prevention strategies Learn from cardiovascular prevention experience. Develop implementation strategies for evidence-based approaches to behavioral modifiers; e.g., exercise and diet. Develop preventive strategies that address exposures beginning in utero. Improve adherence to age appropriate mammographic screening. Develop strategies for physician reinforcement of preventive recommendations. Develop outcomes that address the whole person: treatment, follow ups Include multidisciplinary care team so that psychosocial, behavior, and functional outcomes included. Include outcomes of impact of cancer and care on members. Social/environmental context Understand the barriers to accessing the medical care system by vulnerable populations Fear and trust issues. Safety/stress issues; lack of access to safe environment. Develop and assess community and environmental interventions. Develop partnerships/alliances with local programs. Advocate for legislation to reduce exposures, and policies to provide incentive and support for healthy lifestyle choices, incentivize healthy choices. Develop workplace/church interventions/incentives, with the goal of changing the environment at work (in the community) leading to changes in behavior at home. Develop implementation strategies for environmental exposures that move from the workplace to the community Incentivize smaller companies with bottom line on investment in healthy lifestyles to improve productivity and reduce loss of work hours. Institutional considerations Develop a multi-factorial perspective, including the integrated attention of many disciplines both within and outside of the health sector. Transdisciplinary multilevel research is particularly important for addressing breast cancer disparities in communities. Focus on the lack of or insufficient health-care coverage and low socioeconomic status (e.g., as measured by income, education level, and occupation) as one of the strongest factors in disparities. These factors influence the incidence, prevalence, mortality, and burden of the disease. Evaluate all the resources needed to cover costs of breast cancer detection, treatment, and long-term care. Measure contrasting rates across populations, such as poverty, education, and racial/ethnic patterns, for planning and evaluating intervention programs. Value and support community engagement in institutional interventions. This is now a key consideration for research funding by foundations and agencies. Build upon community assets when developing interventions, e.g., cultural competence, committed community leadership, coordinate, and build on preexisting organizational structure. Develop specific interventions to identify and improve organizational and structural characteristics that contribute to cancer disparities in institutions serving primarily vulnerable populations is paramount. Develop strategies that attend to education and knowledge of the patients and/or family members and their role as a resource during breast cancer detection, treatment, and long-term care. Policy issues Implementation research on methods to adopt of evidence-based recommendations. Measure and report the impact of disparities on public health and the ongoing costs of inaction, formatted with the language of policy makers. Change the language from disparities to ‘achieving health equities’, with a focus on positive aspects of achieving health equity in both health and economic terms. Focus new initiatives on breast cancer risk reduction Address women’s health/family life issues Health promotion messaging. Ethnic communities, cultural norms, and women’s role. Identify similarities between rural and urban challenges to access. May need to focus on other community priorities first. © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited npj Breast Cancer (2015) 15013 Disparities in breast cancer care and research B Canin et al Table 1. (Continued) Operationalize Institute of Medicine report recommendations regarding quality of cancer care Work with NIH and professional societies to implement these recommendations. Communicate across social science, clinical medicine, and basic research. Prepare to respond and measure the imminent challenges Medicaid will face with the Affordable Care Act Develop cancer quality metrics at the system level. Discuss how to address health-care networks that do not accept Medicaid yet will serve large numbers of breast cancer patients at risk for inequities in care. obesity, stress, and chronic inflammation, are highly prevalent in Peter Greenwald, MD, DrPH, National Cancer Institute, National lower socioeconomic status populations. Their impact on devel- Institutes of Health, Bethesda, MD opment and progression of cancer are critical areas to elucidate. Dawn L Hershman, MD, MS, Columbia University, New York, NY The interactions among biology, environment, and behavior along Clifford Hudis, MD, Memorial Sloan Cancer Center, New York, NY Arti Hurria, MD, City of Hope, Duarte, CA with their differential impact on cancer outcomes pose important Elena Martinez, PhD, University of California, San Diego, areas to be further researched. The inevitable large amounts of personalized data from genetic testing, merged with clinical La Jolla, CA Jewel Mullen, MD, MPH, MPA, Department of Public Health, CT electronic medical record and environmental and administrative Electra D Paskett, PhD, MSPH, Ohio State University, Columbus, OH databases, offer tremendous opportunities to examine promoters Edith A Perez, MD, Mayo Clinic, Jacksonville, FL of carcinogenesis and areas to intervene to reduce disparities in Blase Polite, MD, University of Chicago Medicine, Chicago, IL cancer outcomes. Julia H Rowland, PhD, National Cancer Institute, Cancer Control In Table 1, we summarize the strategies that were identified in and Populations Sciences each domain that was considered. As can be seen, there is much Patricia Spears, Advocate, North Carolina to be done, across the continuum from the most basic biology to Annette L Stanton, PhD, University of California, Los Angeles, CA policy. A major theme that permeated the discussion was the Sandra M Swain, MD, MedStar Washington Hospital Center and importance of acknowledging the high societal cost of disparities Georgetown University, Washington, DC in breast cancer care. If this is not a priority for all research Mary Beth Terry, PhD, Columbia University, Mailman School of scientists, it will not be effectively addressed. Public Health, New York, NY Beti Thompson, PhD, Fred Hutchinson Cancer Research Center, CONCLUSIONS Seattle, WA BCRF staff: Ms Margaret Mastrianni and Margaret Flowers, PhD Breast cancer disparities are a major concern for many groups, including racial/ethnic minority, older, rural, less educated, the underserved, those with cultural barriers, and breast cancer survivors who have ongoing medical or psychosocial needs. Many ACKNOWLEDGMENTS cancer patients and survivors suffer disproportionately from This workshop was supported by the Breast Cancer Research Foundation. inadequate access to high-quality diagnosis and treatment and more frequent and severe adverse outcomes from the disease. Basic and implementation science research and the application of COMPETING INTERESTS evidence-based research results on breast cancer disparities are The authors declare no conflict of interest. essential to achieve good health of at-risk communities and for our society as a whole. Future research will benefit from involvement of transdisciplinary teams including academic, public REFERENCES health, and community leaders, and delineating paths through 1 Ansell D, Grabler P, Whitman S, Ferrans C, Burgess-Bishop J, Murray LR et al. A which the research can be translated into wide-scale public community effort to reduce the black/white breast cancer mortality disparity in benefit. Thus, it is important for BCRF and other funders of Chicago. Cancer Cause Control 2009; 20:1681–1688. research to consider how they can best promote research that is 2 Yanez B, Thompson EH, Stanton AL. Quality of life among Latina breast cancer patients: a systematic review of the literature. J Cancer Surviv 2011; 5: focused on eliminating breast cancer health disparities. 191–207. 3 Luckett T, Goldstein D, Butow PN, Gebski V, Aldridge LJ, McGrane J et al. Psy- chological morbidity and quality of life of ethnic minority patients with cancer: a WORKSHOP ATTENDEES systematic review and meta-analysis. Lancet Oncol 2011; 12: 1240–1248. Roshan Bastani, PhD, Fielding School of Public Health, University 4 Freedman RA, He Y, Winer EP, Keating NL. Racial/ethnic differences in receipt of California, Los Angeles, CA of timely adjuvant therapy for older women with breast cancer: are delays Nina Bickell, MD, Mount Sinai Hospital, New York, NY influenced by the hospitals where patients obtain surgical care? Health Serv Res Beverly Canin, Breast Cancer Advocate, New York, NY 2013; 48: 1669–1683. Graham A Colditz, MD, DrPH, FAFPHM, Washington University, 5 Berz JPB, Johnston K, Backus B, Doros G, Rose AJ, Pierre S et al. The influence of St Louis, MO black race on treatment and mortality for early-stage breast cancer. Med Care 2009; 47:986–992. Elise D Cook, MD, MS, University of Texas, MD Anderson Cancer 6 Crowley MM, McCoy ME, Bak SM, Caron SE, Ko NY, Kachnic LA et al. Challenges in Center, Houston, TX the delivery of quality breast cancer care: initiation of adjuvant hormone therapy Carol Estwing Ferrans, PhD, RN, FAAN, University of Illinois at at an urban safety net hospital. J Oncol Pract 2014; 10:e107–e112. Chicago, Chicago, IL 7 Hurria A, Patel SK, Mortimer J, Luu T, Somlo G, Katheria V et al. The effect of Karen M Freund, MD MPH, Tufts Medical Center and Tufts aromatase inhibition on the cognitive function of older patients with University School of Medicine, Boston, MA breast cancer. Clin Breast Cancer 2014; 14: 132–140. Patricia A Ganz, MD, UCLA Schools of Medicine and Public Health, 8 Langford AT, Resnicow K, Dimond EP, Denicoff AM, Germain DS, McCaskill- Los Angeles, CA Stevens W et al. Racial/ethnic differences in clinical trial enrollment, refusal Sarah Gehlert, PhD, Washington University, St Louis, MO rates, ineligibility, and reasons for decline among patients at sites in the npj Breast Cancer (2015) 15013 © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited Disparities in breast cancer care and research B Canin et al National Cancer Institute's Community Cancer Centers Program. Cancer 2014; 16 Freund KM, Battaglia TA, Calhoun E, Darnell JS, Dudley DJ, Fiscella K et al. Impact 120: 877–884. of patient navigation on timely cancer care: The Patient Navigation Research 9 Unger JM, Hershman DL, Albain KS, Moinpour CM, Petersen JA, Burg K et al. Program. J Natl Cancer Inst 2014; 106; dju115; doi: 10.1093/jnci/dju115. Patient Income Level and Cancer Clinical Trial Participation. J Clin Oncol. 2013; 31: 17 Smith BD, Jiang J, McLaughlin SS, Hurria A, Smith GL, Giordano SH et al. Improvement in breast cancer outcomes over time: are older women 536–542. 10 Bickell NA, McEvoy MD. Physicians' reasons for failing to deliver effective breast missing out? J Clin Oncol 2011; 29: 4647–4653. 18 Talarico L, Chen G, Pazdur R. Enrollment of elderly patients in clinical trials for cancer care: a framework for underuse. Med Care 2003; 41:442–446. cancer drug registration: A 7-year experience by the US Food and Drug Admin- 11 Bickell NA, Shastri K, Fei K, Oluwole S, Godfrey H, Hiotis K et al. A tracking and istration. J Clin Oncol 2004; 22: 4626–4631. feedback registry to reduce racial disparities in breast cancer care. J Natl Cancer 19 Levit L, Balogh E, Nass S, Ganz PA. Delivering High-Quality Cancer Care: Charting a Inst 2008; 100: 1717–1723. New Course for a System in Crisis. The National Academies Press, 2013. 12 Friedman EL, Chawla N, Morris PT, Castro KM, Carrigan AC, Das IP et al. Assessing 20 Hurria A, Dale W, Mooney M, Rowland JH, Ballman KV, Cohen HJ et al. Designing the development of multidisciplinary care: experience of the National Cancer therapeutic clinical trials for older and frail adults with cancer: U13 conference Institute Community Cancer Centers Program. J Oncol Pract 2015; 11: e36–e43. recommendations. J Clin Oncol 2014; 32: 2587–2594. 13 Yanez B, Thompson E, Stanton A. Quality of life among Latina breast cancer patients: a systematic review of the literature. J Cancer Surviv 2011; 5:191–207. 14 Yanez B, Stanton AL, Maly RC. Breast cancer treatment decision making among This work is licensed under a Creative Commons Attribution 4.0 Latinas and non-Latina Whites: a communication model predicting decisional International License. The images or other third party material in this outcomes and quality of life. Health Psychol 2012; 31:552–561. article are included in the article’s Creative Commons license, unless indicated 15 O’Hea EL, Monahan BR, Cutillo A, Person SD, Grissom G, Boudreaux ED. Predictors otherwise in the credit line; if the material is not included under the Creative Commons of psychological distress and interest in mental health services in individuals license, users will need to obtain permission from the license holder to reproduce the with cancer. J Health Psychol; advance online publication, 9 September 2014; material. To view a copy of this license, visit http://creativecommons.org/licenses/ doi: 10.1177/1359105314547752. by/4.0/ © 2015 Breast Cancer Research Foundation/Macmillan Publishers Limited npj Breast Cancer (2015) 15013

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npj Breast CancerSpringer Journals

Published: Oct 14, 2015

References