Recruitment and Retention in Mexican-American Populations Breast Cancer in Hispanic/Latina Women

1. Recruitment and Retention in Mexican-American PopulationsBreast Cancer in Hispanic/Latina Women Melissa Bondy, Ph.D. Professor of Epidemiology March 4, 2011

2. Presentation Outline Breast Cancer in Hispanic/Latina Women Incidence/morality rates Unique disparities Breast Cancer Tumor Subtypes The ELLA Binational Breast Cancer Study Study Objectives Organizational Structure and Milestones U.S.-Mexico Comparisons Recruitment and Retention of Study Participants

3. Breast Cancer in Hispanic/Latina Women

4. Female Breast Cancer Incidence and Death Rates* by Race/Ethnicity, Arizona 1999-2001 *Age-adjusted rates per 100,000 Source: Arizona Cancer Registry

6. Breast Cancer in Hispanics Hispanic population in U.S. is largely underserved and under-represented in research studies and clinical trials. The profile of tumor presentation among Hispanic women with breast cancer is consistent with a pattern of more aggressive disease and less favorable prognosis compared to white women: Younger women More likely to have cancer with higher grade More likely to have larger tumors A higher proportion of tumors with later stage A higher proportion of ER- and triple negative tumors More likely to die of their disease than NHWs No data exist on the prevalence of clinically distinct tumor subtypes (i.e., basal, luminal types). Refs: Miller, 2002; Li, 2002; Howe, 2006; Bauer, 2007; Martinez, 2007

7. Breast Cancer in Hispanic/Latina Women Soraya 1969-2006

8. Compiled from (Millikan, Newman et al.; Carey, Perou et al. 2006; Mullan and Millikan 2007). Thompson and Stopeck, 2008

9. Binational Breast Cancer Study Estudio Binacional de Cáncer de Mama US PIs: M. Bondy E. Martinez P. Thompson • Mexico PIs: • Daneri • M. Meza • L.E. Gutierrez Funded by the Avon Foundation and The National Cancer Institute

10. What We Would like to Understand What types of breast cancers are common in women of Mexican descent? What type of breast cancer occur in women migrating from Mexico to the U.S.? Is the disease the same in the country of origin? Are certain risk factors more strongly associated with specific types of breast cancer?

11. Study Objectives To compare profiles of tumor markers of prognostic and predictive clinical importance (ER, PR, HER2, Ki67, cytokeratins) between women in Mexico and Mexican-American women in the US (case-case study design). To assess whether differences in markers are more pronounced by Menopausal status Duration of residence in U.S. or residence status during adolescence Factors associated with lifestyles more representative of the US (low parity, late age at first birth, adult weight gain pattern, and body composition).

12. Additional Objectives Secondary Objective To determine genetic admixture (i.e., level of population mixing of European and indigenous American ancestry) to be correlated with the panel of standard tumor markers and other clinical characteristics. Operational Objectives To strengthen our cancer research collaboration with investigators at academic centers in the states of Sonora and Jalisco, Mexico. To enhance capacity for breast tumor immuno-histochemistry among academic medical centers in Mexico, both as a clinical research tool and as an aid to treatment planning.

13. Binational Breast Cancer Study Estudio Binacional de Cáncer de Mama

14. Eligibility and Data Collection • Eligibility Criteria • Women 18+ years of age • Newly diagnosed with invasive breast cancer within the last 2 yrs • Mexican descent • Data Collection • Risk Factor Questionnaire • Medical Record Data • Saliva/blood (DNA bank) • FFPE tissue collection • Recruitment as of 4/1/10: • 1075 (480 US, 595 Mexico)

15. → Advisory Committee Steering Committee Principal Investigators ↓ US Sites MDACC University of Arizona Mexico Sites Universidad of Sonora Universidad de Guadalajara Instituto Tecnológico de Sonora ↓ ↓ ↓ • Sample Collection • Blood or Saliva • DNA Extraction at each site • IT/Data Management • Questionnaire and Medical Record Data • Web-based database housed at Arizona • Tumor Tissue Collection • Collection at each site • TMA construction at MDACC ↓ ↓ ↓ Tumor Tissue DNA Extraction and Genotyping Blood/Saliva DNA Genotyping Statistics ELLA Study Organizational Structure

16. Recruitment Screened 1871 women from 2007 to present, 1034 of which were eligible for the study To date, consented 850 patients with 810 actively participating Received 64 patient refusals at MDACC

17. Refusals • 48 African American (AA) and 16 Mexican American (MA) • Historical skepticism and mistrust of the medical research system in the AA community • Barriers in access to care • Language barriers • Younger Hispanic population (both overall study population and refusals) • Most common reason given is that the patient is too overwhelmed at time of diagnosis • Other reasons include belief that study gives no direct benefit to the patient, fear of interference with treatment

18. Reasons for Refusal

19. Characteristics of Refusals by Race

20. Comparison of Refusals and Participants by Race

21. Lessons Learned Employ study staff who are of the same race/ethnicity Support from physicians who are treating the populations of interest Study does not require extensive follow up participation

22. Preliminary ResultsUS-Mexico Comparisons

23. Sociodemographic Characteristics

24. Reproductive Factors Women in Mexico women have significantly more children, breast feed more often (and for longer duration), use less OCs and HRT.

25. Family History and Lifestyle Factors Women in Mexico report a significantly lower percentage of family history of BC

26. Clinical and Marker Data Women in Mexico have a lower proportion of early stage BC and a lower proportion of ER positive tumors

27. Family History: How Accurate is Self-Report?

28. Summary of Country Differences Significant differences in risk factor profiles observed between Mexico and the US Parity, breastfeeding, age at menopause, family history of breast cancer, OC use, HRT. Obesity a major problem for both countries. Clinical/marker characteristics (preliminary): Younger age at diagnosis in US vs. Mexico Triple negative disease is high in both countries: 16% in US and 21% in Mexico; difference could reflect variation in lab performance

29. Factors that Influence Mammography Use and Detection:Findings from the ELLA Binational Breast Cancer StudyRACHEL ZENUK, MPHR Zenuk1, J Nodora2, S Carvajal1, A Wilkinson4, I Komenaks3, A Brewster4, G Cruz1, BC Wertheim2, M Bondy4, P Thompson1,2, ME Martinez1,21University of Arizona Mel and Enid Zuckerman College of Public Health, Tucson, Arizona, USA; 2Arizona Cancer Center, Tucson, Arizona, USA; 3Maricopa Medical Center, Phoenix, Arizona, USA; 4M.D. Anderson Cancer Center, Houston, Texas, USA

30. Breast Cancer Screening Guidelines ACS recommends: • Average-risk women should receive mammography at age 40 years or older; and • High-risk women receive annual screening mammography and MRI beginning at age 30 years. USPSTF recommends: • Regular biennial screening mammography should begin at age 50 to 74 years for women at average risk; and • Women under age 50 years should “talk to their doctor” about beginning screening earlier or more frequently than biennially.

31. Change in Detection Method by Diagnosis Year (N=6074) Malmgren et al. BMC Cancer 2008 8:131

32. Significance and Rationale • Compared to non-Hispanic Whites (NHWs), African Americans (AAs) and Hispanics with BC are diagnosed with more advanced disease resulting in poorer prognosis (Smith-Bindman et al. 2006; Carey et al. 2006; Martinez et al. 2007). • †Includes 17,558 women from the NCI–funded Breast Cancer Surveillance Consortium with BC who had mammogram between 1996-2002.

33. Significance and Rationale • Younger age, socioeconomic factors, insurance status, and acculturation/language use have been shown to play a role in knowledge about BC risk and screening mammography receipt; and • Foreign-born women are less likely to know their family history of cancer and receive a mammogram than U.S.-born women Refs: John et al. 2005; Jacobs et al. 2005; Friedman 2006; Ramirez et al. 2000

34. Specific Aims • Specific Aims: • Assess factors that influence screening behaviors among AA and MA women. • Assess method of BC detection among AA and MA women

35. Methods: Study Population and Recruitment • ELLA study population • Inclusion criteria: • AA and MA women aged 40-86 years • BC diagnosis within last 24 months prior to interview • Recruited in U.S. between March 1, 2007 - March 1, 2010

36. Methods: Data Collection • Medical Record Abstraction • Age at diagnosis • Stage at diagnosis • Insurance status • Interviewer-administered RFQ • Sociodemographic characteristics • Reproductive history and hormone use • Anthropometrics • Acculturation (language use/exposure) • Breast health history (mammography use and method of BC detection)

37. Methods: Data collection • Bidimentional Acculturation Scale (Marin and Gamba, 1996) • Highly reliable 8-item language-based scale; each item scored 1(never)-5(always) • Participants were classified as high or low acculturation using average cutoff of 2.99 • Acculturation groups were:

38. Mammography use Prior to Breast Cancer Diagnosis

39. Odds Ratios for Mammography Use* Adj. for age Adj. for age, education Adj. for age, insurance *Compared to African Americans

40. Method of Detection among Screened Women

41. Delay between First BC Symptom(s) and Seeking Medical Attention • p<0.001

42. Factors Influencing Health-seeking Behaviors Reasons for prolonging medical attention one month or more Discouraged 6% Fear 13% Doctor did not have any earlier appointments 12% Unable to see a doctor due to other commitments 6% Unable to afford or lack of health insurance 31% Did not feel it was important 33%

43. Study Findings • Differences in mammography use prior to BC diagnosis observed in AA and MA women by level of acculturation are entirely explained by level of education. • Consistent with data in national surveys (70-80% based on BRFSS), AA and MA women in the ELLA Study report high rates of mammography; however, the majority of BC in the ELLA Study was NOT detected by mammography. • 17% of women reported delaying more than 90 days between noticing their first BC symptom(s) and seeking medical attention from a health professional; the highest proportion was shown for Spanish dominant patients (33.3%).

44. Conclusions • Given that less acculturated MA women are less likely to have a usual source of medical care, they are less likely to follow the USPSTF recommendations to “talk to their doctor about screening mammography”. • AA and MA women must be educated about the importance of breast awareness and prompt reporting of any breast changes to a physician or health professional. • Due to the large proportion of self-detected tumors among ELLA Study participants, additional work is needed to assess the degree of effectiveness of screening mammography in these underserved populations.

45. Ella StudyFuture Directions (N=5000) Epidemiological Risk Factors: Reproductive, Obesity, Physical Activity, Cultural CLINICALPATHOLOGICAL FACTORS, TUMOR SUBTYPES, AGE AT DX X Future Studies Genetic Risk Factors: BRCAgermline mutation, GWAS hits, Ancestry OUTCOMES (RECURRENCE, SURVIVAL)

46. Summary Unique and tremendous (yet challenging) opportunities to address breast cancer disparities in Hispanic/Latina women. Breast cancer rates are lower among Hispanic/Latina women, but unique disparities are evident. Understanding of complex dynamic between tumor biology (i.e., aggressive disease types) and influence of poverty, culture, access to care (i.e., inadequate treatment) is important. Essential to involve the communities served.

47. Acknowledgements MD Anderson Cancer Center M Bondy, A Sahin, K-A Do, C Amos, A Brewster, M Edgerton, G Hortobagyi University of Arizona ME Martínez, P Thompson, AM Lopez, AK Bhattacharyya, ER Greenberg, DS Alberts, R Nagle, R Livingston, I Komenaka Ventana Medical Systems Anne Lodge, Greg Stella, Eric Walk, Tom Grogan Universidad of Sonora/Hermosillo LE Gutierrez-Millan, G Caire-Juvera (CIAD), E Urquieta-Hernandez, MI Arámbula-Rubio, MA Ortiz-Martínez Instituto Tecnológico de Sonora/Cd. Obregon MM Meza, A Gomez Alcalá, MA Ortiz Martinez, JM Ornelas Aguirre, MA Chávez Zamudio, L Pérez Michel Universidad de Guadalajara A Daneri-Navarro, M Jimenez-Perez, R Franco-Topete, J Tavares, A Oceguera-Villanueva, G Morgan-Villela, G. Vazquez, MR Flores, A Barragan Ruiz, A Balderas, A Quintero-Ramos Mexico Health Care Providers Instituto Mexicano del Seguro Social, Hospital Civil de Guadalajara, Hospital Jaliscience de Cancerología

48. ¡¡Muchas Gracias!!

49. Characteristics of Ella Study Population by Race/Ethnicity and Acculturation *P<0.05