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Beliefs About Breast Cancer: Are They Deadly?

Beliefs About Breast Cancer: Are They Deadly?. Carol Estwing Ferrans, PhD, RN, FAAN Professor and Associate Dean for Research Co-Director, Center of Excellence for Eliminating Health Disparities College of Nursing University of Illinois at Chicago.

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Beliefs About Breast Cancer: Are They Deadly?

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  1. Beliefs About Breast Cancer:Are They Deadly? Carol Estwing Ferrans, PhD, RN, FAAN Professor and Associate Dean for Research Co-Director, Center of Excellence for Eliminating Health Disparities College of Nursing University of Illinois at Chicago

  2. Mortality -- Black and White Breast Cancer in Chicago, 1980-2005 116% Age-Adjusted Female Breast Cancer Mortality for Chicago, Per 100,000 Population

  3. Breast Cancer Mortality Rates, by Race, Chicago, 1996 - 2005 How Much Higher is Year Black White Black Rate? 1996 36.5 36.5 0% 1999 42.0 32.5 29% 2000 41.1 29.5 39% 2001 37.3 24.4 53% 2002 41.0 24.7 66% 2003 40.4 24.0 68% 2005 41.3 19.2 116%

  4. Black:White Breast Cancer Mortality Disparity, New York City, US & Chicago, 2000-2005

  5. Early Detection is the KEY • When breast cancer is detected and treated early • almost all women (98%) will be alive five years later. • When breast cancer is detected late • only 26% of women will be alive five years later. Data from American Cancer Society

  6. Study 1. Cancer Screening in African Americans

  7. Cancer Screening in African Americans • To decrease excess cancer mortality in African Americans, we need to identify the barriers to early detection. • For cancer survivors who are at increased risk for recurrence and new cancers, continued surveillance is critically important. • Purpose: to identify factors that hinder regular cancer screening in African Americans, both in cancer survivors and the general population (non-cancer controls).

  8. Carol Estwing Ferrans, PhD, RN, FAAN, University of Illinois at Chicago Catherine Ryan, PhD, RN, University of Illinois at Chicago Laura E. Archer, MS, Duke University Medical Center Sally Freels, PhD, University of Illinois at Chicago Lan Lan, PhD, Duke University Medical Center Electra Paskett, PhD, Ohio State University Robert Molokie, MD, Unversity of Illinois at Chicago David Hurd, MD, Wake Forest University Baptist Medical Center Alice Kornblith, PhD, Dana Farber Cancer Institute National Cancer Institute (NIH R01 CA89418).

  9. Conceptual Model Individual Characteristics --Spirituality --Trust in health care providers --Life stress/felt racial discrimination --Cultural beliefs about cancer Social Support --Family and friends Economic/Health Care Resources --Employment difficulties --Access to health care/health insurance --Family income and employment status Physical Health and Functioning --Health status --Comorbidities --Fertility & sexual problems Quality of Life --Satisfaction with life --Anxiety, depression, hostility --Fear/anxiety about cancer Cancer Screening --Compliance with screening recommendations Cancer and Treatment

  10. Survivors: 500 African Americans Breast cancer (n = 214) Prostate cancer (n = 197) Colon cancer (n = 89) Currently free of cancer Completed primary treatment 3+ years ago Non-Cancer Controls: 512 African Americans Never diagnosed with cancer Controls selected via random digit dialing from the areas in which the cancer survivors resided. Controls matched (as a group) to the survivor group on age, gender, health insurance status, and education level. Case-Control Design

  11. Heme/Onc Associates of Central NY Northern Indiana Ohio State University University of Chicago University of Illinois at Chicago Wake Forest Walter Reed Washington University – St. Louis Hartford Hospital Jersey Shore Medical Center Navy Medical Center – San Diego Queens Hospital Medical Center Roswell Park Cancer Center Sibley Memorial Hospital Wayne Memorial Hospital - SCCC Jesse Brown VA Medical Center 16 Participating CALGB Institutions

  12. Locations of Participating Institutions

  13. Screening Compliance • American Cancer Society Recommendations • Women • Breast • Cervix • Colon • Men • Prostate • Colon

  14. Non-Compliance with Screening Guidelines p<.0001

  15. Explaining the Variance in Screening 6% 10% 28% 11% 54% 8% Model explained 16% of variance in Screening

  16. Gender and Screening Compliance p<.0001 P<.001

  17. Trust/Distrust in Health Care Provider and Screening Compliance p<.0001

  18. Education and Screening Compliance p=.005

  19. Insurance Status and Screening Compliance p<.004

  20. Region and Screening Compliance p=.01

  21. Major Findings - Screening • Non-compliance with guidelines for breast, colon, and prostate cancer screening: • Controls: 37% to 58% • Cancer Survivors: 14% to 17% • Participation in screening was explained by: • Gender • Trust/Distrust in health care provider • Education • Health insurance • Surviving cancer • City of residence

  22. Chicago: Low Screening Rates Dartmouth Atlas Project (2010) reported: • Chicago has some of the lowest mammogram screening rates in the nation, • Even for women whose screening is paid for by Medicare (Dartmouth Atlas Project, D. Goodman et al., 2010)

  23. Study 2. Cultural Beliefs about Breast Cancer in Caucasian, African American, and Hispanic Women

  24. Original Investigative Team Carol Ferrans, PhD, RN, FAAN Garth Rauscher, PhD Barbara Akpan, MS, RN Tim Johnson, PhD Dinah Ramirez, RN Marilyn Willis, MS, RN Richard Warnecke, PhD

  25. Primary Reasons for Low Screening Rates • Chicago has some of the lowest mammogram screening rates in the nation, • Even for women whose screening is paid for by Medicare (Dartmouth Atlas Project, D. Goodman et al., 2010) Cost Beliefs Fear

  26. Cultural Beliefs • Identify cultural beliefs contributing to later stage of breast cancer at diagnosis for African American, Hispanic, and Caucasian women in Chicago. • Focus on beliefs interfering with • Participation in Screening • Diagnosis of Suspicious Breast Symptoms • Follow through with Treatment

  27. Identification of 17 Beliefs Step One: Cultural Experts/ Published Reports • Identify cultural beliefs about breast cancer that could contribute to late-stage diagnosis. (41 beliefs) Step Two: Focus Groups (four groups, n = 37) • Broad based: “Have you ever HEARD of these beliefs or known anyone who believed them?” Step Three: Cognitive Interviews (n = 19) • Determine interpretation and clarity of wording of 17 true/false questions.

  28. Participants • General Population n = 117 • Suspicious Breast Symptoms (self-identified) n = 266 • Breast Cancer (diagnosed 3-4 months) n = 954 Face-to-Face Interviews

  29. African-Americans (p=0.02) Whites (p=0.67)

  30. Can beliefs be deadly? Greater number of beliefs was positively associated with: • Longer delay before seeking diagnosis of suspicious symptoms. • Later stage of cancer at diagnosis (Stage 2,3,4 vs 0,1). • Longer delay in starting cancer treatment.

  31. Characteristics of Breast Lumps If a breast lump is not painful, it is not cancer. Gen Pop AA 5%Latina 11%White 0% Symptoms AA 14%Latina 18%White 5% Breast CancerAA 5%Latina 11%White 1% (p<.01)

  32. Characteristics of Breast Lumps If a breast lump is not painful, it is not cancer. Gen Pop AA 5%Latina 11%White 0% Symptoms AA 14%Latina 18%White 5% Breast CancerAA 5%Latina 11%White 1% (p<.01) If a breast lump does not get bigger, it is not cancer.  Gen Pop AA 13% Latina 14%White 0% (p=.05) Symptoms AA 11% Latina 4% White 5% Breast Cancer AA 12%Latina 18% White 3% (p<.01)

  33. Characteristics of Breast Lumps If a breast lump is not painful, it is not cancer. Gen Pop AA 5%Latina 11%White 0% Symptoms AA 14%Latina 18%White 5% Breast CancerAA 5%Latina 11%White 1% (p<.01) If a breast lump does not get bigger, it is not cancer.  Gen Pop AA 13% Latina 14%White 0% (p=.05) Symptoms AA 11% Latina 4% White 5% Breast Cancer AA 12%Latina 18% White 3% (p<.01) If a breast lump is touched/pressed often, the lump will turn out to be breast cancer. Gen Pop AA 13%Latina 3%White 8% SymptomsAA 7%Latina 16%White 5% Breast CancerAA 11%Latina 20%White 4% (p<.01)

  34. Self-Help Techniques The more you worry about breast cancer, the more likely you will get it. Gen Pop AA 8%Latina 17%White 8% Symptoms AA 8%Latina 16%White 11% Breast Cancer AA 7%Latina 16%White 5% (p=.06)

  35. Self-Help Techniques The more you worry about breast cancer, the more likely you will get it. Gen Pop AA 8%Latina 17%White 8% Symptoms AA 8%Latina 16%White 11% Breast Cancer AA 7%Latina 16%White 5% (p=.06) If you take good care of yourself, you won’t get breast cancer.   Gen Pop AA 13% Latina 24%White 5% (p=.05) Symptoms AA 18% Latina 27% White 11% Breast CancerAA 7%Latina 18%White 2% (p=.001)

  36. Self-Help Techniques The more you worry about breast cancer, the more likely you will get it. Gen Pop AA 8%Latina 17%White 8% Symptoms AA 8%Latina 16%White 11% Breast Cancer AA 7%Latina 16%White 5% (p=.06) If you take good care of yourself, you won’t get breast cancer.   Gen Pop AA 13% Latina 24%White 5% (p=.05) Symptoms AA 18% Latina 27% White 11% Breast CancerAA 7%Latina 18%White 2% (p=.001) If you have a breast lump, a “natural” remedy can help to get rid of it. Gen Pop AA 11% Latina 17% White 20% Symptoms AA 8%Latina 10% White 11% Breast CancerAA 14% Latina 11%White 6%

  37. Faith-Based Beliefs If a woman has enough faith in God, she won’t need treatment for breast cancer.   Gen PopAA 24% Latina 11%White 0% (p = .004) Symptoms AA 17%Latina 6% White 0% (p=.04) Breast CancerAA 19% Latina 23%White 3% (p<.0001)

  38. Faith-Based Beliefs If a woman has enough faith in God, she won’t need treatment for breast cancer.   Gen PopAA 24% Latina 11%White 0% (p = .004) Symptoms AA 17%Latina 6% White 0% (p=.04) Breast CancerAA 19% Latina 23%White 3% (p<.0001) Faith in God can protect you from breast cancer.   Gen Pop AA 39% Latina 38%White 5% (p < .001) Symptoms AA 38% Latina 35%White 5% (p = .02) Breast CancerAA 24% Latina 44%White 4% (p<.0001)

  39. Faith-Based Beliefs If a woman has enough faith in God, she won’t need treatment for breast cancer.   Gen PopAA 24% Latina 11%White 0% (p = .004) Symptoms AA 17%Latina 6% White 0% (p=.04) Breast CancerAA 19% Latina 23%White 3% (p<.0001) Faith in God can protect you from breast cancer.   Gen Pop AA 39% Latina 38%White 5% (p < .001) Symptoms AA 38% Latina 35%White 5% (p = .02) Breast CancerAA 24% Latina 44%White 4% (p<.0001) If you pray enough, sometimes breast lumps will disappear.   Gen Pop AA 39% Latina 33% White 25% Symptoms AA 43% Latina 18% White 11%(p<.001) Breast CancerAA 35% Latina 22%White 7% (p<.0001)

  40. Futility of Treatment If breast cancer is cut open in surgery, it will grow faster.   Gen PopAA 32% Latina 14%White 8% (p=.019) Symptoms AA 31% Latina 33% White 26% Breast CancerAA 17% Latina 32% White 11%(p=.005)

  41. Futility of Treatment If breast cancer is cut open in surgery, it will grow faster.   Gen PopAA 32% Latina 14%White 8% (p=.019) Symptoms AA 31% Latina 33% White 26% Breast CancerAA 17% Latina 32% White 11%(p=.005) If a woman is poor, she won’t get cured from cancer, because she won’t get the best treatment.   Gen Pop AA 29% Latina 25% White 42% Symptoms AA 22% Latina 12%White 4% (p=.07) Breast CancerAA 21% Latina 40% White 30%(p=.02)

  42. Futility of Treatment If breast cancer is cut open in surgery, it will grow faster.   Gen PopAA 32% Latina 14%White 8% (p=.019) Symptoms AA 31% Latina 33% White 26% Breast CancerAA 17% Latina 32% White 11%(p=.005) If a woman is poor, she won’t get cured from cancer, because she won’t get the best treatment.   Gen Pop AA 29% Latina 25% White 42% Symptoms AA 22% Latina 12%White 4% (p=.07) Breast CancerAA 21% Latina 40% White 30%(p=.02) If breast cancer is treated correctly, it can be cured. (FALSE) Gen Pop AA 13% Latina 19% White 10% Symptoms AA 10%Latina 0%White 11%(p=.07) Breast CancerAA 8% Latina 4%White 13%

  43. Futility of Treatment If breast cancer is cut open in surgery, it will grow faster.   Gen PopAA 32% Latina 14%White 8% (p=.019) Symptoms AA 31% Latina 33% White 26% Breast CancerAA 17% Latina 32% White 11%(p=.005) If a woman is poor, she won’t get cured from cancer, because she won’t get the best treatment.   Gen Pop AA 29% Latina 25% White 42% Symptoms AA 22% Latina 12%White 4% (p=.07) Breast CancerAA 21% Latina 40% White 30%(p=.02) If breast cancer is treated correctly, it can be cured. (FALSE) Gen Pop AA 13% Latina 19% White 10% Symptoms AA 10%Latina 0%White 11%(p=.07) Breast CancerAA 8% Latina 4%White 13% It doesn’t really matter if you get treated for breast cancer, because if you get cancer, it will kill you sooner or later. Gen PopAA 13% Latina 11% White 13% SymptomsAA 3%Latina 14%White 0% Breast CancerAA 8%Latina 36%White 2% (p<.0001)

  44. American Cancer Society Guidelines • Released January 2011 • Report of the Metropolitan Chicago Breast Cancer Task Force • 37 Evidence-Based Recommendations • Illinois Breast Cancer Disparities Act • Komen Foundation (Janice Phillips)

  45. Study 3. Disseminating Information to address Cultural Beliefs about Breast Cancer in African American Women

  46. Beating Breast Cancer DVD • Five African American women, all breast cancer survivors, are featured in the film. • Unscripted; each woman tells her story in her own words. • Addresses cultural beliefs and fear, which were identified as significant barriers in our earlier research. • One of the featured survivors is a physician, and so provides the credibility of a medical expert.

  47. DVD: Beating Breast Cancer "What about your male friends? How are they going to look at you? And I looked at him and I said, 'It's not about them. It's about me. I'm still a woman...and I'm focusing on living.'" Tasha, age 37

  48. Beating Breast Cancer DVD • Endorsed by the American Cancer Society, Illinois Region. • Endorsed by Chicago Department of Public Health. • National Telly Award, Health and Wellness Category for short film, 2011. • YouTube 1,168 views

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