Beliefs About Breast Cancer:Are They Deadly?

Carol Estwing Ferrans, PhD, RN, FAANProfessor and Associate Dean for Research

Co-Director, Center of Excellence for Eliminating Health DisparitiesCollege of Nursing

University of Illinois at Chicago

Mortality -- Black and White Breast Cancer in Chicago, 1980-2005

Age-Adjusted Female Breast Cancer Mortality for Chicago, Per 100,000 Population

37.4

19.2

38.141.4

0.0

5.0

10.0

15.0

20.0

25.0

30.0

35.0

40.0

45.0

50.0

1980 1981 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005

Year

Rat

e pe

r 100

,000

Fem

ales

White Black

116%

Breast Cancer Mortality Rates, by Race, Chicago, 1996 - 2005

How Much

Higher isYear 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%

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

1.011.13

1.08

1.21

1.311.36 1.36

1.391.36

1.47

1.39

1.53

1.66 1.68

1.62

2.16

1.03 1.04

1.00

1.20

1.40

1.60

1.80

2.00

2.20

2000 2001 2002 2003 2004 2005

Year

Mo

rtal

ity

Rat

e R

atio

New York City US Chicago

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

Study 1.

Cancer Screening in African Americans

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).

National Cancer Institute (NIH R01 CA89418).

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

Conceptual Model

Cancer and

Treatment

Physical Health and Functioning

--Health status--Comorbidities

--Fertility & sexual problems

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

Quality of Life--Satisfaction with life--Anxiety, depression,

hostility--Fear/anxiety about

cancer

Cancer Screening--Compliance with

screening recommendations

Case-Control Design

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.

16 Participating CALGB Institutions

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

Locations of Participating Institutions

Screening Compliance

American Cancer Society Recommendations

Women– Breast– Cervix– Colon

Men– Prostate– Colon

Non-Compliance with Screening Guidelines

17%15% 14%

37%

46%

58%

0%

10%

20%

30%

40%

50%

60%

70%

Breast Colon Prostate

No

n-C

om

pli

an

ce

Survivors

Controls

p<.0001

Explaining the Variance in Screening

Trust

Education

Cancer

Gender

Insurance

Region

28%

11%

8%54%

10%6%

Model explained 16% of variance in Screening

Gender and Screening Compliance

.72

.48

.78

.59

0

0.2

0.4

0.6

0.8

1

Male Female

Co

mp

lia

nc

e

Controls

Survivors

P<.001

p<.0001

Trust/Distrust in Health Care Provider and Screening Compliance

0

0.2

0.4

0.6

0.8

1

1.2

1.4

1.6

1.8

1 2 3 4 5 6

Trust

Co

mp

lian

ce

Survivors

Controls

p<.0001

Education and Screening Compliance

.64.67 .65.75

.58.60.69

.56

0

0.2

0.4

0.6

0.8

1

Collegegraduate

Somecollege

Highschool

Less thanHS

Co

mp

lia

nc

e

SurvivorsControls

p=.005

Insurance Status and Screening Compliance

.72.69.62 .61

.43

.65

.49

.60

0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1

Medicare/Medicaid

Military/VA Private NoInsurance

Co

mp

lia

nce

Survivors

Controls

p<.004

Region and Screening Compliance

.80.79.75

.61.59

.64.66.59

0

0.2

0.4

0.6

0.8

1

Chicago, IL WashingtonDC

Columbus,OH

Winston-Salem, NC

Co

mp

lian

ce

Survivors

Controls

p=.01

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

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)

Study 2.

Cultural Beliefs about Breast Cancer in Caucasian, African American, and Hispanic Women

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

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

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

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.

Participants

General Population

n = 117

Suspicious Breast Symptoms (self-identified)

n = 266

Breast Cancer (diagnosed 3-4 months)

n = 954

Face-to-Face Interviews

African-Americans (p=0.02)

Whites (p=0.67)

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.

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 Cancer AA 5% Latina 11% White 1% (p<.01)

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 Cancer AA 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)

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 Cancer AA 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%Symptoms AA 7% Latina 16% White 5%Breast Cancer AA 11% Latina 20% White 4% (p<.01)

Characteristics of Breast Lumps

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)

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 Cancer AA 7% Latina 18% White 2% (p=.001)

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 Cancer AA 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 Cancer AA 14% Latina 11% White 6%

Self-Help Techniques

If a woman has enough faith in God, she won’t need treatment for breast cancer.  Gen Pop AA 24% Latina 11% White 0% (p = .004)

Symptoms AA 17% Latina 6% White 0% (p=.04)Breast Cancer AA 19% Latina 23% White 3% (p<.0001)

Faith-Based Beliefs

If a woman has enough faith in God, she won’t need treatment for breast cancer.  Gen Pop AA 24% Latina 11% White 0% (p = .004)

Symptoms AA 17% Latina 6% White 0% (p=.04)Breast Cancer AA 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 Cancer AA 24% Latina 44% White 4% (p<.0001)

Faith-Based Beliefs

If a woman has enough faith in God, she won’t need treatment for breast cancer.  Gen Pop AA 24% Latina 11% White 0% (p = .004)

Symptoms AA 17% Latina 6% White 0% (p=.04)Breast Cancer AA 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 Cancer AA 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 Cancer AA 35% Latina 22% White 7% (p<.0001)

Faith-Based Beliefs

Futility of Treatment

If breast cancer is cut open in surgery, it will grow faster.  Gen Pop AA 32% Latina 14% White 8% (p=.019)

Symptoms AA 31% Latina 33% White 26%Breast Cancer AA 17% Latina 32% White 11% (p=.005)

Futility of Treatment

If breast cancer is cut open in surgery, it will grow faster.  Gen Pop AA 32% Latina 14% White 8% (p=.019)

Symptoms AA 31% Latina 33% White 26%Breast Cancer AA 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 Cancer AA 21% Latina 40% White 30% (p=.02)

Futility of Treatment

If breast cancer is cut open in surgery, it will grow faster.  Gen Pop AA 32% Latina 14% White 8% (p=.019)

Symptoms AA 31% Latina 33% White 26%Breast Cancer AA 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 Cancer AA 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 Cancer AA 8% Latina 4% White 13%

Futility of Treatment

If breast cancer is cut open in surgery, it will grow faster.  Gen Pop AA 32% Latina 14% White 8% (p=.019)

Symptoms AA 31% Latina 33% White 26%Breast Cancer AA 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 Cancer AA 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 Cancer AA 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 Pop AA 13% Latina 11% White 13%Symptoms AA 3% Latina 14% White 0%Breast Cancer AA 8% Latina 36% White 2% (p<.0001)

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)

Study 3.

Disseminating Information to address Cultural Beliefs about Breast Cancer in African American Women

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.

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

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

Beating Breast Cancer Program

Events within four African American communities with high death rates from breast cancer: Roseland, Pullman, West Pullman, and Riverdale. These events take place in a variety of locations, such as churches, beauty shops, food pantries, school events for parents, and others.

Short Film on DVD addressing the worries about breast cancer that keep women from getting screened, presented by five African American cancer survivors.

Nurse Educators (n=36) from the National Black Nurses Association and the Alpha Eta Chapter of the Chi Eta Phi Sorority provide expert information for women at our events.

Beating Breast Cancer Program

Navigation: Our staff provide personal guidance (one-on-one) for women who need help in finding a mammogram they can afford.

Tote Bags distributed to those attending events, containing information on (1) where to go for low-cost and no-cost mammograms; (2) copy of the DVD to watch and share with others; (3) brochures on mammography and breast health.

Women Participating at Events

• 245 educational events have been held in the four target communities.

• 4,750 women have attended events and completed questionnaires

• Almost all women are African American, so we are reaching the intended audience.

Responses to Beating Breast Cancer DVD 

• 99% thought the DVD was worth watching

• 89% stated they learned something new fromthe DVD

• 85% reported that the DVD helped them to decide to get a mammogram.

Navigation for Finding an Affordable Mammogram

• Of women attending the events, 760 have requested assistance in finding an affordable mammogram (16%)

• After the navigation process is completed, we continue to follow-up on an annual basis to encourage subsequent screening.

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With gratitude to our funders:

• Roybal Center for Health Promotion and Translation, University of Illinois at Chicago (NIH National Institute on Aging P30 AG022849) 

• Center for Population Health and Health Disparities, University of Illinois at Chicago (NIH National Cancer Institute P50 CA106743)  

• Center of Excellence in Eliminating Health Disparities, University of Illinois at Chicago (NIH Institute on Minority Health and Health Disparities P60 MD003424)

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