The AVON Foundation Comprehensive Breast Center at Grady: Clinical, Research and Navigation Successes Sheryl G.A. Gabram, MD MBA FACS Professor of Surgery, Emory Winship Cancer Institute Director, AVON Comprehensive Breast Center Georgia Cancer Coalition Distinguished Scholar Kimberly R. Jacob Arriola, PhD MPH Associate Professor Rollins School of Public Health of Emory University PI, AVON Foundation Community Education & Outreach Initiative History of Breast Cancer: Emory z 1937: 1st cancer clinic in United States, $50,000 donation from CEO Coke z WCI rebuilt in 2003:$72m z P30 NCI designation “It always gave me pleasure to do something for somebody without being asked to do it . I don’t like to be asked. I didn’t want to be given credit.” Robert W. Woodruff Grady Health System z 1892: Atlanta Constitution editor Henry Grady supported vision of quality hospital care for the poor z 953 beds, 10 neighborhood clinics z Georgia Cancer Center for Excellence Why we exist… Network of Strength Executive Director Joya Harris MPH Emory 2000 Emory: Public Health Spring 2009 Underlying Causes of the Black-White Racial disparity in breast cancer mortality: a population based analysis zNCI SEER 244, 786 ♀ from 1990-2003 zPurpose: to evaluate racial disparities in BC outcome using rate ratios B/W ♀ for incidence, mortality and hazard rate – Sub-comparisons done for ER-status – Rate ratios allowed comparison of trends Menashe I et al: JNCI 2009;101:993-1000 NCI Biostatistics Branch, Division Cancer Epi Results zFrom 1990-2004, incidence RR stable (age specific incidence rates BW lower) zMortality ↓: B 36 to 29/100,000 ♀ W 30 to 22/100,000 ♀ zIrrespective of ER status, hazard of BC death higher in BW vs WW (controlled for age dx, stage, grade year and SES) z Especially in first few years after diagnosis Menashe I et al: JNCI 2009;101:993-1000 Racial Disparities in Cancer Survival among randomized clinical trials patients of SWOG z19,457 pts (11.9% AA): 35 SWOG phase III z10 year OS AA vs CA – 68% vs 77% early stage pre-menopausal BC – 52% vs 62% early stage post-menopausal BC – 13% vs 17% for advanced ovarian CA – 6% vs 9% for advanced prostate CA zAA worse survival with uniform stage, Tx, f/u Albain KS, et al: JNCI 2009;101:984-992 Reasons for Cancer Disparities Environment (Social, System factors) Genetics (Biology) Lifestyle (Behavioral) Gabram SGA, Lund MJ et al: Br Can Res Treat 2006;100 suppl 1 S97 Gabram et al: Cancer 2008:113:602-607 Breast Imaging z2005: Delays 6 months zMammography task force zIncrease in overall growth from 11,942 to 14,835 imaging studies for 2005-2006 zFrom 2005-2008, 35% growth 11,942 →16,140 studies! Gabram SGA, et al: Br Can Res Treat 106. Suppl 1 S260-261. San Antonio Breast Conference Symposium December 2007 Growth in Breast Cancer volume parallels Mammography AVON Breast Patient Care Review Conference zGoals – Practice evidenced care: NCCN guidelines – Provide similar care across providers – Identify patients for clinical trials zData: ≈ 267 patients presented/re-presented in 2008 with documentation of discussions Clinical, Correlative, Registry accrual: Implemented 2007, Increased 2008 z2007 – – – – Neoadjuvant: EU822 TAILORx Brachytherapy (B39 and registry) NSABP B-42 z2008: – 4 clinical trials + 2 correlativeregistry trials 2007: 15 patients, 10.4% 2008: 33 patients, ≈20% Reasons for Cancer Disparities Environment (Social, System factors) Genetics (Biology) Lifestyle (Behavioral) Gabram SGA, Lund MJ et al: Br Can Res Treat 2006;100 suppl 1 S97 Gabram et al: Cancer 2008:113:602-607 Racial Differences in TN Breast Tumors Lund MJ et al: Br Can Res Tr 2009;113:357-70 ¾Population-based study ¾Eligibility – WISH*, Black/White females; primary unilateral invasive breast cancer ¾Description – Age 20-54; N=831 3 Atlanta counties (Fulton, DeKalb, Cobb) May 1, 1990-Dec 31, 1992 ¾Tumor Population –Pathology samples centrally analyzed for Tumor Markers ¾ N=479 [117 B, 362 W] ⇒ Weighted analyses *Womens’ Interview Study of Health Racial Differences in Triple Sub-groups (%) ER-PRHER2- Overall ER+PR+H ER-PRHER2+ ER2- ER+PR+H ER2+ Black * 29.5 46.6 56.2 38.7 6.8 8.7 7.3 6.1 White 21.7 64.4 6.0 7.7 * p-value < 0.001 for black vs. white women 60 50 40 % 30 Triple Negative Tumors by Age 56.6 55.4 42.2 41.2 44.2 42.2 28.6 20 10 17.3 19.6 19.5 0 Black 20-34 White 35-39 40-44 45-49 50-54 Lund MJ et al: Br Can Res Tr 2009;113:357-70 Disparate racial benefits of chemotherapy in breast cancer ¾ To evaluate the outcomes associated with different chemotherapy regimens in a largely AA group with early stage breast cancer ¾ Population-Based Cohort of all FEMALES, identified using SEER cancer registry ¾ Diagnosed during 2003-2004 with primary, invasive unilateral breast cancer: Follow-up through 12/31/2007 ¾ Resident of Fulton/DeKalb counties of Metro Atlanta treated at 3 EUH affiliated sites AVON Foundation Supported K. May: SABCS 2008 #2091 Patient Population K. May: SABCS 2008 # 2091 Results K. May: SABCS 2008 #2091 Conclusions ¾ ♀ with TNTs have a higher likelihood of short-term recurrence and mortality than other tumor subtypes and no statistically significant differences in outcome were noted for AA or CA ♀ treated with chemotherapy ¾ Despite similar treatment, AA ♀ with ER+PR+HER2- tumors experienced higher recurrence and mortality rates compared to CA women ¾ Reasons and Future Direction: AA ♀ develop luminal B/higher RS on oncotypeDX, CYP2D6 poor metabolizers, or compliance K. May: SABCS 2008 #2091 Reasons for Cancer Disparities Environment (Social, System factors) Genetics (Biology) Lifestyle (Behavioral) Gabram SGA, Lund MJ et al: Br Can Res Treat 2006;100 suppl 1 S97 Gabram et al: Cancer 2008:113:602-607 Rollins School of Public Health AVON Community Education & Outreach Initiative Team K. Jacob Arriola PhD Principal Investigator W. Wilkins-Thompson PhD Co-Investigator Tamara Mason MPH Project Director 28 Community Patient Navigators 11 Patient Navigators Maquina Harris BA Administrative Assistant Avon CEOI History z November 2001-May 2002 – Dr. Otis Brawley conceptualized the program z June 2002 – 44 lay people were trained as Community Health Advocates z April 2003 – Avon Foundation Comprehensive Breast Center opened due to capital investment monies from AF, GCC, and GMH z December 2003 – 10 breast cancer survivors were trained to serve as PNs z April 2006 – RSPH Staff assumed leadership and management of project z August 2008 – CHAs were retrained and renamed Community Patient Navigators Program Overview zGoal: – Raise awareness about breast cancer – Increase mammography screening rates – Enhance the process of receiving prevention and treatment services at Grady Health System zSeeks to give the AFCBC enhanced visibility and community recognition within Atlanta zWorks to build and maintain strong partnerships with local CBOs that focus on breast health/cancer Use of Lay Health Advisors zA variety of different names – Lay health workers, community health advisors /workers/advocates, natural helpers, promotoras zUses members from the target community deliver health education zOften used with marginalized populations – Promote cultural competence – May help address issues of distrust of the HCS – Inexpensive to recruit, train, and supervise – May be used in a variety of different settings Training Lay Health Advisors zAnnual training – Breast cancer statistics – How to interact with/support patients – How to manage stress/care for self – How to host community events zBimonthly continuing education – Variety of topics selected based on programmatic need & PN input Program Volunteers z Community PNs – Dedicated to raising awareness about the benefits of early detection – Host and participate in breast health events – Equipped with teaching tools – Charged with identifying 5 women per event who are interested in getting a mammogram z Clinic PNs – Presence in the AFCBC Breast Clinics z Make appointment reminder phone calls z Provide support to patients who are first diagnosed z Individual PNs – Mental/emotional support during/after appointments – Links to resources – Liaison between patients & social workers 2009 Community Patient Navigators Process Data for CPNs z 107 events in 2009* – 5,674 people z Locations* – Grady health clinics / hospital-49 – Health centers/clinics-16 – Churches-12 – Community orgs-11 – Schools-4 – Other-15 z Demographics (N=70)* – – – – 94% Women 93% AA 50% annual income < $20k Highest education z 16% < HS diploma z 22% HS diploma z 36% Some college z Screening/interest forms** – 96 completed – 20 (21%) had mammogram *1/1/09-6/30/09; **1/1/09-4/30/09 Effects of AVON Outreach and Internal Navigation program on breast cancer diagnosis History 2001: 125 CHAs/20 Navigators 1,148 community intervention programs and over 10,000 participants Study Cross sectional study: 20012004 487 breast cancer cases in registries 89% AA, 5% Caucasian, 2% Hispanic, 4% other 30 25.8 25 19.2 20 15 12.4 12.6 10 5 0 Stage 0 Gabram SGA et al Cancer 2008:113:602-607 Stage IV 2001 2004 2009 Patient Navigators Process Data for PNs Clinic z 26 hours/week x 26 weeks=676 hours – – – – – – 9B Breast 10B Infusion 3A Mammography Patient calling GYN clinic Rad/Onc Individual z 173 patients served 56% 12% 12% 8% 7% 5% – Telephone support – Support during appointments – Home visits – Self-Image Center Jan 1-June 30, 2009 75% 13% 10% 2% Outcome Evaluation z Qualitative Methods – Utilize textual data – Assumptions z Reality is socially constructed z Variables are complex & interwoven – Purpose z Contextualization, Interpretation, Perspectives – Approach z Inductive z Seeks pluralism, complexity z Quantitative – Utilize numerical data – Assumptions z Social facts have an objective reality z Variables can be identified/ relationships measured – Purpose z Generalizability, Prediction, Causal explanations – Approach z Deductive z Seeks consensus, the norm Qualitative Evaluation Methods zIndividual in-depth interviews with 18 patients who were enrolled in the program – Brief quantitative survey to capture patient demographics zResearch Questions: – How does PN impact patients’ lives? – What are the strengths & weaknesses of the Avon Foundation CEOI PN Program? Ford, Thompson, Mason, Rayton, & Arriola, in press Qualitative Results z How does PN impact patients’ lives? – Improved knowledge about the treatment process & breast cancer more generally – Greater confidence in their ability to ask questions – Informational, emotional, & spiritual support Asking Questions z I have plenty of confidence with [my PN]. When I can’t explain for myself, I explain to her what I need to ask the doctor, I try to explain it to her first. So when the doctor comes in, she explains it to him more clearly. And the doctor answers my questions and sometimes I understand and sometimes I’m a little confused because he speaks too fast. And I don’t want to say because he is the doctor, you know? So I ask [my PN] what he said and she explains it to me slowly and I understand. What are the Strengths & Weaknesses of the Program? z Strengths – Relationship with PNs – PNs are consistently available – PNs are BC survivors z Weaknesses – Enrollment into the program When [the doctor] told me that [I had cancer], I’m crying, I’m thinking I’m going to die. What will happen to my future? What will happen to my children? Everything together at the same time. I cried and the doctor brought [my PN] to me and she comforted me. She told me I had the same thing she had and that she lost her whole breast and she’s okay and I was going to be okay too. She explained everything and tried to calm me down. She supported me and encouraged me all the time. For me, it was good. She is very good. Limitations zSocially desirable responding – Great care taken to minimize this zSmall sample size – Generalizability was sacrificed for richer, detailed accounts Quantitative Evaluation Methods zLongitudinal pre-post study – Small study (N=61) – 6-month follow-up period zStructured interviews administered at AFCBC z$15 monetary incentive zAt follow-up – 2 expired – 13 were lost to follow-up – 46 were retained in the study (78% retention) Arriola, Mason, & Thompson, In preparation Change in Psychosocial Variables Variable Baseline Mean (SD) Follow-up Mean (SD) t Social/Family Well-being 16.3 (4.3) 18.9 (4.9) -3.9*** Emotional Well-being 18.4 (5.5) 20.2 (4.0) -3.2** Functional Well-being 19.8 (5.7) 20.4 (5.2) -0.6 Social Support 81.4 (13.8) 80.5 (14.0) 0.6 Not able to get appt/too long of a wait to see MD 1.7 (1.1) 1.6 (.8) 0.6 Not able to find an MD who speaks language/gets culture 1.6 (1.1) 1.1 (.3) 2.9** No transportation or $ for taxi 1.8 (.6) 1.5 (.6) 2.4* Not able to get off from work 2.2 (1.4) 2.7 (1.5) -2.0* Not able to find childcare 2.7 (1.5) 2.9 (1.4) -0.3 Perceived Barriers to health care ***p<.001; **p<.01; *p<.05 Limitations zSmall sample size – Limited power – Inability to engage in multivariate analyses zInability to make causal statements – Lack of a control group zNatural changes in quality of life are expected throughout the treatment process zLoss of 22% of participants to follow-up Challenges zStructural – Working in a large, urban hospital zProgrammatic – Identifying newly diagnosed patients – Volunteer stress & burnout zPatient-level – Multiple barriers to care – Completing radiation zSusan G. Komen for the Cure Intensive Patient Navigation Program Lessons Learned zPatient navigation varies depending on context zOpen communication with all PNs – Sensitivity to their well-being zTargeting the program to those who need it most zCreating a level of community saturation that is most effective – Importance of patient follow-up Overall Conclusions zThe need for comprehensive programs to eliminate breast cancer disparities is great zPN offers a promising strategy that addresses – Environmental factors – Lifestyle factors zPN may be an important part of a comprehensive strategy to support marginalized cancer patients zThere are very real limits on how to study PN in a hospital setting “…If you want to go quickly, go alone If you want to go far, go together…” African Proverb Many THANKS to … z AVON Foundation z Georgia Cancer Coalition z Sindab z Susan G. Komen, for the Cure z It’s the Journey z License tag Fund z Lance Armstrong Questions
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