A Community-based Collaborative Approachto Improve Breast Cancer Screening in UnderservedAfrican American Women

Rachel Karcher & Dawn C. Fitzpatrick &

Dawn J. Leonard & Scott Weber

# Springer Science+Business Media New York 2014

Abstract Although African American women in the UnitedStates have a lower incidence of breast cancer compared withwhite women, those younger than 40 years actually have ahigher incidence rate; additionally, African American womenare more likely to die from breast cancer at every age comparedwith white women. Racial disparities in breast cancer mortalityrates are especially significant inMaryland, which ranks fifth inthe nation for breast cancer mortality, and in Baltimore City,which has the second highest annual death rate for AfricanAmerican women in Maryland. To address this disparity incare, Med-IQ, an accredited provider of CME, collaboratedwith Sisters Network Baltimore Metropolitan, AffiliateChapter of Sisters Network® Inc., the only national AfricanAmerican breast cancer survivorship organization, to sponsortheir community-based educational outreach initiative. Thecollaborative mission was to engage at-risk African Americanwomen, their families, local organizations, healthcare profes-sionals, and clinics, with the goals of increasing awareness,addressing fears that affect timely care and diagnosis, andencouraging women to obtain regular mammograms.Intervention strategies included (1) a “Survivor Stories” video,(2) patient outreach consisting of neighborhood walks and aneducational luncheon, and (3) a community outreach utilizingdirect mailings to local businesses, community groups, andhealthcare professionals. Trusted and well-known communityresources 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 thewomen who sought screening were diagnosed with breastcancer and underwent treatment.

Keywords Breast cancer . screening . patient education .

patient outreach . minority populations

Introduction

The gap in breast cancer mortality between African Americanand white women in the United States (US) has been steadilywidening since the early 1980s; by 2007, the death rate was 41%higher for African American women than for white women [1].This inequality exists despite the fact that African Americanwomen face a lower incidence of being diagnosed with thedisease [1]. Compared with white women, African Americanwomen have higher rates of distant-stage breast cancer and areless likely to survive 5 years (77 % vs. 90 %, respectively) [2].

Women in the state ofMaryland are at notable risk; the stateis ranked fifth in the nation for breast cancer mortality rates[3]. Although annual mammograms are the best way forwomen to lower their breast cancer mortality risk, only72.6 % of women older than 50 years in Maryland havereceived a mammogram in the past year, a rate that drops to39.1 % among uninsured women [3].

This disparity is particularly evident in the city ofBaltimore, which has one of the largest population of minor-ities in the country (69 %) and a high proportion of peopleliving below the poverty line (20.1 %) [3]. Despite the fact thatBaltimore’s breast cancer incidence rate is lower than both thenational and state rates, the city has the second highest annualdeath rate for African American women in Maryland. InBaltimore, 6.4 % of cases are diagnosed at stage IV, the worstincidence rate by stage of diagnosis in the state [3].

R. Karcher (*) : S. WeberMed-IQ, 5523 Research Park Drive, Suite 210,Baltimore, MD 21228, USAe-mail: rachel.karcher@gmail.com

D. C. Fitzpatrick :D. J. LeonardSisters Network Baltimore Metropolitan, Baltimore, MD, USA

D. J. LeonardLifebridge Health, Randallstown, MD, USA

J Canc EducDOI 10.1007/s13187-014-0608-z

Disparities in breast cancer burden for populations definedby race, culture, and socioeconomic status are well recog-nized. The sources of racial disparities are complex and arerooted in historic and contemporary inequities [4]. Limitedaccess to healthcare services, cultural barriers, and socialinequalities have been identified as contributors to disparatecancer care and poorer cancer outcomes among minoritypopulations [5–7]. Fears among African American womenregarding breast cancer screening include a generalized fearof the healthcare system and expectations about mammogramscreenings, as well as fear of unnecessary surgery or potentialabandonment by a spouse following a mastectomy [8].Furthermore, recent studies have indicated that poorbreast cancer survival rates persist for women of someracial groups even when access to care and socioeconomicstatus are controlled [9].

Gaining traction against racial inequities in breast cancermortality is a significant undertaking. Efforts to raise publicawareness of this disparity, improve knowledge of recom-mended mammography screening guidelines, and provideinformation regarding available public health servicesfor breast cancer diagnosis and treatment are urgently neededin the African American community, including in the cityof Baltimore.

Based on the clear need for breast cancer education,African American women in the Baltimore area were targeted.Two organizations collaborated to implement the educational,community-based outreach initiative designed to improve theunderstanding of breast cancer screening importance, over-come cultural perceptions and beliefs/attitudes, and mobilizeat-risk African American women in Baltimore to be screened.This unique collaboration brought together the resources andcapabilities of Med-IQ, an accredited provider of continuingmedical education, and the Sisters Network BaltimoreMetropolitan (SNBM), an advocacy group of breast cancersurvivors devoted to increasing awareness of the impact ofbreast cancer on the African American community.

Methods

The collaborative mission of this initiative was to engage at-risk African American women, their families, local organiza-tions, healthcare professionals (HCPs), and clinics, with thegoals of increasing awareness, addressing fears that affecttimely care and diagnosis, and encouraging women to obtainregular mammograms. The national outreach initiative createdand implemented by Med-IQ and Affiliate Chapters of SistersNetwork® Inc. included several components: (1) a “SurvivorStories” video; (2) patient outreach consisting of neighbor-hood educational walks, called the “Gift for Life Block Walk®(GFLBW),” and breast health educational luncheon seminars,called the “Pink RibbonAwareness Initiative (PRAI)”; and (3)

community outreach with a direct-mail campaign to localbusinesses and community groups, HCPs, and clinics.

Videos

The Survivors Stories was a 5-min video featuring 16 breastcancer survivors from SNBM who discussed their breastcancer journeys to encourage women to be screened. Thevideo wove together footage of survivors sharing their expe-riences to create a cohesive story about overcoming stigma,addressing fear of breast cancer, and clarifying misconcep-tions about treatment. These experiences strengthened thesurvivors’ resolve and commitment to reach out to otherwomen and changed their outlook on obtaining necessaryhealthcare. The video included a call-to-action and provideda toll-free number to reach a call center, which could provideadditional information and encouragement toward obtaininga mammogram.

Patient/Neighborhood Outreach

The collaborating organizations used zip code data to identifyneighborhoods in Baltimore with prominent health disparitiesand high incidences of underserved, at-risk African Americanwomen in which to conduct the GFLBWs and PRAI educa-tional seminars. The GFLBWs were used to reach womenwithin the neighborhoods; to engage them in face-to-facediscussions to increase awareness of the importance of screen-ing, early detection, and diagnosis/treatment; and to helpovercome related fears. The GFLBW program has been usedsuccessfully by the Sisters Network®, canvassing AfricanAmerican communities to distribute breast health educationalbrochures and community resources to aide in promotingpositive healthcare.

For each GFLBW, small groups of volunteers from thecollaborating organizations canvassed pre-assigned blocks.The volunteers spoke with the age-appropriate female residentsto assess awareness of breast cancer mortality rates and knowl-edge of preventive measures. Information was collectedthrough a set of standardized survey questions asked at eachresidence. Canvassers collected contact information for follow-up and provided residents with an educational resource and aninvitation to attend the local PRAI event being held later thatday. The educational resource consisted of a medical glossary, alist of common breast cancer symptoms, a list of communityresources for screening and treatment, and a call-to-action witha toll-free number to provide guidance and resources forobtaining a baseline or follow-up mammogram.

After the neighborhood canvassing, community residentsjoined volunteers, local health organizations, and communityleaders at the PRAI event. These educational sessions includ-ed a screening of the Survivors Stories video, brief presenta-tions by a local oncologist specializing in breast cancer

J Canc Educ

treatment and breast cancer survivors, and a question andanswer session. Representatives from local resources wereavailable to give women the opportunity to schedule an ap-pointment for a mammogram or obtain information on breastcancer diagnosis and treatment.

Community Outreach

The collaborators engaged local businesses and organizationsto assist in raising awareness and mitigating fears by distrib-uting the educational message to at-risk African Americanwomen and their families. Community resources includedretailers, places of worship, beauty salons, schools, and librar-ies. These community resources received a mailed packet withthe Survivors Stories video, a cover letter describing theinitiative and their role in disseminating the message (includ-ing presenting the video to specific audiences that use theirfacility/service), an educational brochure on breast cancer, anda handout to promote the GFLBWs and PRAI Lunch andLearn events. HCPs and health clinics near the communitieswere also sent the informational packet to share with theirpatients. Additional methods to increase the awareness of theinitiative included e-mails to local organizations and politicalleadership, press releases to local media, and involvement ofsocial media platforms and online video sharing Web sites.

Outcomes

The overall goals of this initiative were to: (1) provide out-reach and education to a population at high risk of breastcancer mortality; (2) increase awareness of the impact ofbreast cancer within a specific community in Baltimore City;(3) address fears and mistrust of the healthcare system; and (4)encourage women to seek breast cancer screening. At theconclusion of each PRAI, participants received a short surveyto assess the impact of the event on their understanding andperceptions about breast cancer screening and their intent toobtain a mammogram. Perceptions of breast cancer screening,past screening history, and intent for screening were collectedfrom the residents engaged during the GFLBWs. Call centerstaff conducted follow-up calls with women reached throughthe GFLBWs to determine screening rates. Demographic sta-tistics were also collected on the number of residents andcommunity stakeholders reached through the outreach efforts.

Results

Two GFLBWs and PRAIs were conducted in the summer andfall of 2011 in two neighborhoods within Baltimore. Thevideos and community resource packets were distributed tobeauty salons, doctor’s offices, clinics, churches, schools, andhospitals within the same neighborhoods. Table 1 shows the

numbers reached through each component of the initiative.The Survivor Stories video achieved the greatest reach, withmore than 1,100 online views alone. The number of additionalviews of the video through HCP offices and other communitystakeholders could not be assessed. A total of 194 houses inthe target neighborhoods were reached through the GFLBWs,andmore than 150 people attended the PRAI luncheon seminars.

A total of 171 women answered survey questions duringthe twoGFLBWs (Table 2). Although these women reported ahigh awareness of the risk of breast cancer and related mor-tality in African American women, approximately one-third(35 %) reported that they had never received a mammogram,more than one-third (36 %) reported that they do not regularlyperform breast self-exams, and nearly one-fourth (23 %) re-ported that they do not currently undergo regular clinicalbreast exams. Of those who had received a mammogram atleast once in the past (n=111), 78 % received it in the pastyear, 6 % received it 2 years ago, 8 % received it 3 to 4 yearsago, and 8 % reported not having one performed for manyyears (data not shown).

Only 28women could be reached through follow-up phonecalls after the GFLBWs and the PRAIs. However, of thesewomen, 20 reported that their perceptions about breast cancerhad changed, 14 had received mammograms, and an addition-al 8 had scheduled mammograms. Among the women whohad not scheduled or received a mammogram, reasons pro-vided included a lack of transportation, lack of medical insur-ance, other medical issues taking priority, and a lack of time.Of those screened, three had questionable results requiringfurther investigation, and two of these women were diagnosedwith breast cancer. One woman underwent surgery, and theother is receiving follow-up treatment.

Table 1 Outreach campaign strategies and numbers reached

Outreach strategy Numbersreached

Survivor stories video

Number of DVDs distributed 177

Number of online views 1,102

Pink Ribbon Awareness Initiatives

Total number of attendees 151

Gift for Life Block Walks

Number of houses contactedthrough community canvassing

194

Community stakeholders

Number of schools, salons, churches,hospitals, and other outreach venues towhich materials were distributed viamail and other activities

153

Healthcare professionals

Number of community clinics, doctors,nurses, navigators, and hospital breast centersreached through the mailings and other activities

57

J Canc Educ

Discussion

African American women have a higher incidence rate before40 years of age and are more likely to die from breast cancer atevery age compared to other races [1]. Potential explanationsfor this difference include later disease stage at diagnosis, aswell as worse stage-specific survival. In their analysis of sevenmammography registries, Smith-Bindman and colleagues de-termined that African American women were more likely toreceive inadequate mammographic screening (i.e., longer in-tervals between mammograms) than white women [10]. Theyalso noted that African American women were more likelythan the other racial groups (white, Asian, and NativeAmerican) to have advanced, high-grade, lymph node–positive breast tumors, a disparity that was either reduced oreliminated when patients were stratified according to screen-ing history, suggesting that differential use of mammographymay contribute to this racial disparity.

The underpinnings of the lower mammography rates typi-cally observed in the African American population are multi-factorial and include limited access to care, cultural barriers,and social inequalities [5–8]. An often overlooked componentrelated to lower mammography rates is the underservedAfrican American population’s fears of the healthcare system,unnecessary surgery, potential abandonment by spouse or

partner following a mastectomy, and screening-related expec-tations. Reducing disparities remains a significant challengedespite the abundance of position statements and initiativespublished by the US government, public health agencies, andoncology associations advocating strategies and recommen-dations to reduce cancer care disparities [3, 11–13].

Educational interventions promoting proactive involve-ment in preventive health measures have demonstrated impor-tant improvements. A study of 127 low-income AfricanAmerican women in East Baltimore found that a 50 % mam-mography screening rate could be achieved through the use ofeducational interventions [5]. Included in the interventionswere home visits, breast examination appointments, and asession at a local church conducted by a team consisting of acommunity leader, medical provider, and health educators.Participants were also providedwith transportation, child care,and a patient advocate to promote and facilitate screenings [5].Another prevention project educating older African Americanwomen about breast health and mammogram screening re-sulted in 79 % of the 162 participating women receiving amammogram [14]. The project included personal invitationsextended by recognized community leaders to a free breasthealth conference. The conference included speakers from theAmerican Cancer Society, cancer survivors groups, and localnonprofit primary care centers describing the advantages ofearly detection and dispelling myths associated with canceramong African American women [14]. In a third project, hairsalon stylists were recruited to promote breast health messagesto African American and African Caribbean women.Improved self-examination rates and greater intention to un-dergo clinical breast exams were associated with women whoreceived the stylist-delivered messages [15]. Together, thesestudies demonstrate that culturally sensitive educationalprograms targeted toward African American women aresuccessful in improving mammography screening rates.Although publically available resources exist to aid thesewomen in obtaining mammograms and other health services,African American women must first be aware of these pro-grams to utilize them.

A study by the Susan G. Komen for the Cure (Komen)association, the largest grassroots network of breast cancersurvivors and activists in the world, found that althoughMaryland’s age-adjusted breast cancer incidence rate is similarto the national rate, the age-adjusted breast cancer death rate isthe fifth highest in the nation [3]. In addition, only 21 % ofeligible women are screened by the Maryland Breast andCervical Cancer Early Detection Program (BCCP), whichprovides breast and cervical cancer screening for low-incomewomen. Focus groups conducted byKomen identifiedfear and lack of knowledge, lack of insurance or finances, andlack of transportation as barriers to screening and diagnosis.Women also emphasized the need for greater awareness andoutreach, as well as facilitation of screenings. As a result of

Table 2 Gift for lifeblock walk survey results Survey question Results

N=171(%)

Awareness of Sisters Network BaltimoreMetropolitan

Yes 31

No 69

Awareness of breast cancer prevalence inthe African American community

Yes 86

No 14

Currently perform monthly breastself-exams

Yes 64

No 36

Currently receive annual clinicalbreast exams

Yes 77

No 23

Has previously received a mammogram

Yes 65

No 35

Plan to obtain a mammogram

Yes 85

No 15

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this study, Komen Maryland established the priority to pro-mote breast health awareness and importance of screeningamong African American women across the state and partic-ularly in Baltimore. To promote this objective, Komen rec-ommends establishing partnerships with community organi-zations, such as churches and sororities, along with programsthat provide population-specific outreach workers.

Our community-based patient education initiative strivedto (1) bridge the gap between at-risk African American wom-en and HCPs and resources in their community and (2) pro-vide education and encouragement delivered by women likethem, with goals of improving awareness, increasing mam-mogram screenings, and dispelling misunderstandings aboutbreast cancer, screening, diagnosis, and treatment. Althoughmany of the women engaged during this initiative were awareof the risk of breast cancer and related mortality in AfricanAmerican women, many had still not received clinical breastexams or mammography, and many were not conductingbreast self-exams. Available evidence supports that mammog-raphy screening reduces breast cancer mortality, althoughcurrently available guidelines are conflicting, with somerecommending yearly mammography in women 40 years orolder and others recommending biennial screening mammog-raphy for women aged 50 to 74 years [16–18]. Guidelines arealso conflicting on breast self-exams, with some no longerrecommending instructing women how to perform self-exams; however, the American Cancer Society and NationalComprehensive Cancer Network recommend that women befamiliar with their breasts and promptly report changes to theirhealth care provider [17–19].

This initiative resulted from a unique collaboration be-tween a for-profit medical education company and a grass-roots patient advocacy group. The advocacy group providedeffective, tested outreach strategies, as well as a trusted re-source within the priority population. The medical educationcompany obtained funding and provided resources to supportand expand on the outreach strategies of the patient advocacygroup. Strengths of this intervention were its focus on the at-risk population, their families, and community supportgroups, as well as the engagement of HCPs by the collaborat-ing organizations, which brought proven outreach expertise inthe African American community together with a team ofexperts in educational program design and implementation.Other strengths included a simple educational design withstraightforward, clear messages. Unfortunately, the initiativedid not have the resources to determine breast cancer screen-ing rates in comparable populations during the same timeframe; therefore, no statistical analyses could be conductedon our results. Additionally, we could not determine the truereach and effectiveness of the outreach efforts to HCPs andcommunity stakeholders. Another limitation to the initiativeincluded the low number of women who could be contactedfor follow-up despite multiple attempts. However, among the

women who could be reached for follow-up, the number ofwomen who had received or at least scheduled mammogramswas high. Notably, as a result of this patient education initia-tive, two women who sought screening were diagnosed withbreast cancer. By using community resources that are trustedand well-known to the priority population as mediums topromote the initiative, this collaborative patient educationprogram achieved a broad and effective reach.

Acknowledgments The authors gratefully thank the members of theSisters Network Baltimore Metropolitan for implementing and sharingtheir programming and community initiatives and for their continuoussupport of women with breast cancer. The authors also thank the follow-ing current and past employees of Med-IQ for their role in this initiative:LaWanda Stone, Martha Inglis-Legall, Catherine Bretz Mullaney, JoanneTetrault, Stephanie Stowell, Kenny Khoo, and Rebecca Julian.

The initiative was funded through an educational grant fromSanofi-aventis U.S. Inc.

References

1. American Cancer Society. Breast Cancer Facts & Figures 2011–2012. Atlanta: American Cancer Society, Inc.

2. American Cancer Society (2009) Cancer Facts & Figures for AfricanAmericans 2009–2010. American Cancer Society, Atlanta

3. Susan G. Komen for the Cure. Susan G. Komen for the CureMaryland 2011 Community Profile. Available at: www.komenmd.org. Accessed January 3, 2013.

4. Institute of Medicine. Unequal Treatment: Confronting Racial andEthnic Disparities in Healthcare. (2003) National Academies Press.Available at: http://www.nap.edu/openbook.php?isbn=030908265X.Accessed September 15, 2010

5. Garza MA, Luan J, Blinka M et al (2005) A culturally targetedintervention to promote breast cancer screening among low-incomewomen in East Baltimore, Maryland. Cancer Control 12(Suppl):34–41

6. Ansell DL, Grabler P, Whitman S et al (2009) A community effort toreduce the black/white breast cancer disparity in Chicago. CancerCauses Control 20:1681–1688

7. 2008/2009 Health Disparities in Cancer Fact Sheet. Center ofDisease Control Division of Cancer Prevention and Control.Available at: http://www.cdc.gov/cancer/healthdisparities/pdf/0809_hd_fs.pdf

8. Peek ME, Sayad JV, Markwardt R (2008) Fear, fatalism and breastcancer screening in low-income African-American women: the roleof clinicians and the health care system. J Gen Intern Med 23:1847–1853

9. Albain KS et al (2009) Racial disparities in cancer survival amongrandomized clinical trials patients of the Southwest Oncology Group.J Natl Cancer Inst 101:984–992

10. Smith-Bindman R, Miglioretti DL, Lurie N et al (2006) Does utili-zation of screening mammography explain racial and ethnic differ-ences in breast cancer? Ann Intern Med 144:541–553

11. Engebretson J, Mahoney J, Carlson ED (2008) Cultural competencein the era of evidence-based practice. J Prof Nurs 24(3):172–178

12. Metropolitan Chicago Breast Cancer Task Force. Available at: http://chicagobreastcancer.org. Accessed September 15, 2010.

13. US Department of Health and Human Services. Developing HealthyPeople 2020. Available at: http://healthypeople.gov/2020/. AccessedJanuary 3, 2013.

J Canc Educ

14. Kidder BPOW, Kidder B (2008) P.O.W. (Protect Our Women):results of a breast cancer prevention project targeted to olderAfrican-American women. Soc Work Health Care 47:60–72

15. Wilson TE, Fraser-WhiteM, Feldman J et al (2008)Hair salon stylists asbreast cancer prevention lay health advisors for African American andAfro-Caribbean women. J Health Care Poor Underserved 19:216–226

16. National Cancer Institute. National Cancer Institute Fact SheetMammograms. Available at: http://www.cancer.gov/cancertopics/factsheet/Detection/mammograms. Accessed November 10, 2013

17. American Cancer Society. American Cancer Society Guidelines forthe Early Detection of Cancer. Available at: www.cancer.org.Accessed November 10, 2013

18. Nelson HD, Tyne K, Naik A, Bougatsos C, Chan BK, Humphrey L(2009) Screening for breast cancer: an update for the U.S. PreventiveServices Task Force. Ann Intern Med 151:727–737

19. National Comprehensive Cancer Network (NCCN). Clinical PracticeGuidelines in Oncology. Breast cancer screening and diagnosis. Version2.2013. Available at: www.nccn.org. Accessed November 10, 2013

J Canc Educ