The Influence of Race and Income on The Illness Experience of Breast Cancer.

Margaret Quinn Rosenzweig

PhD, FNP-BC, AOCNP, FAANProfessor, University of Pittsburgh School of Nursing

Cancer Health Disparities

Cancer health disparities – Differences in the incidence, prevalence, mortality and burden of cancer

and related adverse health conditions that exist among specific population groups in the United States.

Historical Perspective

Historical Perspective

Pre 1860

Slavery

Up To 100 Years

Jim Crow Laws and Segregation – Charity Care

1954 Brown vs. Board of Education Ruling

Resistance to Integration

Historical Perspective

Hill-Burton Act

1945 - aided the uninsured but perpetuated segregated health care

The National Medical Association

1895 - led the efforts toward public awareness of racial disparities in health

Research Issues

1942-1990 - Tuskegee Syphilis Study

1945 – 200 - Henrietta Lacks

Perpetuated distrust

Civil Rights Act

1964 prohibited racial discrimination in public accommodations, which

included hospitals, and it made “separate but equal” illegal

Disparity and Outcomes – 40 years• 1973, Henschke noted an “alarming increase” in the cancer mortality in

African Americans in the preceding 25 years.

• National Cancer Institute (NCI) increased its focus on racial differences in cancer incidence, mortality, and survival.

• In 1986, “Special Report on Cancer in the Economically Disadvantaged.”• The report concluded that the poorer cancer outcome in African Americans compared

with White Americans is primarily related to lower socioeconomic status in African Americans.

• The study concluded further that poor Americans, regardless of race, have a 10% to 15% lower five-year survival.

• In 1998, the President's Cancer Panel issued a report that concluded that the biological

concept of race is untenable and has no legitimate place in biological science.

• The panel further concluded that racial injustice is a determinant of negative health

outcomes.

• The panel challenged the entire scientific community to review the social values that shape

its scientific perspectives with respect to race and to examine the biases and fundamental

assumptions that scientists have made about the meaning of race in scientific

investigation.

• Given the fact that populations do differ and that race in itself is not the determinant of

such differences, the panel called for a serious dialogue in the scientific community to face

the challenge of elucidating how populations really differ.

Disparity and Outcomes – 40 years

• The Institute of Medicine (IOM) issued two reports: The

Unequal Burden of Cancer (1999) and Unequal

Treatment (2003), which documented respectively the

disproportionate cancer burden in African Americans

and the fact that African Americans, even at the same

economic and health insurance status, are less likely to

receive the most curative treatment for cancer.

• These landmark reports along with other important

studies suggest that cancer disparities are driven by a

complex set of social, economic, cultural, and health

system factors.

Disparity and Outcomes – 40 years

Post Racial America?

Disparity and Outcomes – 40 years

Racism as persistent issue in American fabric

Phelan, J. C., & Link, B. G. (2015). Is Racism a Fundamental Cause of Inequalities in Health?. Annual Review of Sociology, 41, 311-330.

“We conclude that racial inequalities in health endure primarily because racism is a fundamental cause of racial differences in SES and because SES is a fundamental cause of health inequalities.

In addition to these powerful connections, however, there is evidence that racism, largely via inequalities in power, prestige, freedom, neighborhood context, and health care, also has a fundamental association with health independent of SES.”

Phelan, J. C., & Link, B. G. (2015). Is Racism a Fundamental Cause of Inequalities in Health?. Annual Review of Sociology, 41, 311-330.

Disparity and Outcomes – 40 yearsLargely Ignored

Breast Cancer Disparity

Persistent Breast Cancer Survival Disparity“Rising Tides Do not Lift All Boats”

Adherence to Recommended Systemic Therapy for Women Newly Diagnosed with Breast Cancer

• Review of 2006 new patient charts

• Black (n=29), White (n=456)

• Recommended treatments were stage appropriate

Overall 36.4% non adherence rate for black women for recommended systemic breast cancer treatment, with a significant racial difference for adherence (p=.01). These results were similar to national findings.

Recommended Chemotherapy

Fully Adherent to Chemo

Black19/29

(52.8%)12/19

(63.2%)

White256/456 (53.9%)

N=209/256 (81.3%)

Symptom Science

University of California – San Francisco School of Nursing

Dodd M, Janson S, Facione N, Faucett N, Froelicher ES, Humphreys J, Taylor D. Advancing the science of symptom management. Journal of Advanced Nursing. 2001;33:668–676.

Original Research Questions

What are the patient based barriers to illness management, treatment and symptom management strategies perceived by women with breast

cancer?

Is there a difference in quality of life and symptom distress according to race and income in women with breast cancer?

Are there differences in patient based barriers to treatment and symptom management strategies perceived by women

with breast cancer according to race or income?

Methods – Design

Two Breast Cancer GroupsWomen Categorized into Four Groups

❖ Early stage breast cancer receiving first chemotherapy

❖ Advanced Stage / Metastatic breast cancer – Anti-tumor or supportive therapies

❖ Race – Self report – White (W) / Black (B)

❖ Income – Self report – Low income (LI) or non low income (NLI)

❖ US Health and Human Services Low Income Guidelines

❖ 2X2 prospective, mixed methods, consecutive sampling between subjects

▪ Cross Sectional

▪ Between Subjects – Race and Income

▪ Dependent Variables – Symptoms, symptom

distress and symptom management strategies

Methods – Instruments

McCorkle Symptom Distress Scale (SDS)

13 Item self report Likert scale

scored, 1-5

Higher scores = Worse symptom distress

Functional Assessment of Cancer

Therapy (FACT)

Functional, Social, Physical, Emotional Subscales

27-item self-report Likert scale , 0-4.

Higher scores=Better QOL

Scripted Interview

Qualitative Analysis

Results – Metastatic & AdjuvantDemographics (n=141)

Race/

Income

Age

(Mean)

Married Completed

High School

Annual

Income

>50,000

Annual

Income

<10,000

Currently

Employed

Black/High Income -

Total

(n=20)

49.3

(SD 11.2)

9/20

45%

17/20

85%

10/12

83.3%

X 11/20

55%

Black /Low Income -

Total (n=33)55.8

(SD 11.5)

3/33

.09%

20/33

60.6%

X 16/33

48.5%

5/33

15%

White /High Income

-Total (n=49)54.5

(SD 10.1)

19/49

38%

47/49

95.9%

31/49

63.2%

X 29/49

59.1%

White/Low Income -

Total (n=39)54.7

(SD 10.1)

18/39

46%

34/39

87.1%

X 13/39

33.3%

13/39

33%

Results – Functional Assessment of Cancer Therapy (FACT)

66

68

70

72

74

76

78

80

Black High

Income

Black Low

Income

White High

Income

White Low

Income

Range -36-108 - higher scores indicate higher quality of life

Early Stage Late Stage

Symptom Distress Scale

0

5

10

15

20

25

30

35

Black High

Income

Black Low

Income

White High

Income

White Low

Income

Early Stage Late Stage

Results – Symptom Distress Scale (SDS)

Higher scores indicate worse symptom distress. (Range 13-65.0 )

Common Themes - Universal

• Overwhelming time of Illness

• Progressive loss – role, appearance, ability to do good work

• Losing beauty – “strips your dignity”

• Life changes – new normal

• God/spirituality as important force

• Fatigue from the “fight”

White – High Incomen=49

White – Low Incomen=39

Early Stage

Support

“he (MD) told me…jump in the water – there are a lot of people who

will help you swim…and he was right.”

Participatory

“I have a friend who is an oncologist and I get on the internet and look

things up…”

“If I have questions I have no problem talking to my doctor.”

Advanced Stage

Sense of Resentment/Betrayal

“I resent not being the person I was”

“I talk to the Lord…I say you told me you were going to heal me.”

Fear of Physical and Economic Dependence

“Its almost horrifying to think that I would end up living in my

children’s cellar.”

Early Stage

Strong Belief In Care and Treatment

“try to think positive and have a good rapport with your doctors..

that's very important. …half the battle is with your doctors…

“it isn’t an easy road, it’s a long road but you can’t sit around and be

depressed”

Perception of Luck

“I feel I’m lucky to be here.”

“I think I’ve been lucky.”

Minimization of Self/Symptoms

“They (clinic staff) have answered my lame questions and lame fears”

“It can be very difficult, and I feel bad for my husband”

Black – High Income n=20

Black – Low Income n=39

Early Stage

Stay Positive

“..I am an 80/20 kind of person…I celebrate the 80% that’s right with

me…if my 20% takes over then I know that I got mixed up.”

“…you just can’t dwell on being sick. I mean if you get nauseated okay,

its going to happen but you can’t dwell on that…”

Advanced Stage

Demand Positive Attitude

“ I can envision I’m going to die, but I’m not worried about it. I just live

my life. You have to.”

“I don’t want my kids to see me sick….I put on a big show.”

Early Stage

Struggling to Adhere

“At first I turned it (chemo) down.. I didn’t want to take it…I was

getting so depressed.”

Non-participatory

“I might ask something stupid that they may not want to answer.”

No Support

“You know how men are. …he kind of disappeared..”

Advanced Stage

Social and Physical Distress

“I’ve always considered myself a very strong black woman, but I was

shattered.”

Appearance/Hair Loss – Poor body image

“I’m going to lose my apartment and my little bit of money.”

Uncertainty Regarding Treatment Goals

“They didn’t explain it to me.”

Key FindingsAfrican American women have worse quality of life and more symptom distress as compared to white high income women.

These perceptions led to questioning the need and or futility of treatment, end of life care or symptom management strategies for African American women

African American women feel that are not collaborative in treatment decisions and that they are not given appropriate information

White low income women reported high symptom distress but minimized in

interviews, relating they were “lucky”.

White low income women did not understand treatment decisions (the same as AA women) but it did not impact their willingness to follow through with recommended treatment.

White low income women reported high symptom distress but minimized in

interviews, relating they were “lucky”.

White and Black higher income women worried a great deal about employment/insurance loss

Perceived Racism

End of Life Care

Better understand - White low income populations

What are Microinequities?

1. Microinequities are subtle acts of discrimination which are often covert, unintentional and hard to prove.

2. They are frequently unrecognized by the perpetrator but have a significant impact on the recipient.

3. Microinequities occur wherever people are perceived to be "different“.

4. Microinequities work both by excluding the person of difference and by making that person less self-confident and less productive.

5. Microinequities discourage creativity and risk-taking.

Experiences of discrimination may be a neglected psychosocial stressor.

In your day-to-day life how often do the following things happen to you?

• Experience less courtesy than other people.

• Experience less respect than other people.

• Experience poorer service than other people at restaurants or stores.

• People act as if they are afraid of you.

• People act as if they think you are dishonest.

• People act as if they’re better than you are.

• You are called names or insulted.

• You are threatened or harassed.

http://haac.ca/wp-content/uploads/2014/03/February-10_2014-Dr-Williams-Lecture-Dalhousie.pdf

Racism and Health: Social and Community Context

Telomere length shortening leads to premature aging through oxidative damage

Environmental factors such as childhood trauma, persistent stress and economic deprivation lead to oxidative damage and telomere shortening.

This can be linked to zip-code and neighborhood as a risk factor for not only the development of cancer but how treatment is tolerated and ultimately survival.

Poverty, Racism and Health: Chronic Stress

Racism and Health: End of Life Care• National Hospice and Palliative Care Organization

(NHPCO 2010) estimates that less than 10% of all patients enrolled in hospice care are African American.

• The four major reasons are believed to be: spiritual beliefs, medical distrust, institutional/medical racism and personal experience with death including poor symptom management. (Bullock (2011)

• Belief - if someone is “God fearing" and /or a "true believer" …"you will wait on the Lord.” (Crawley 2000).

White low income - Why different?

• “Avoidance and wishful thinking are forms of coping. ….deal with uncomfortable truths through avoidance or pretending better truths exist.”

Largely Ignored

That the poor are invisible is one of the most important things about them. They are not simply neglected and forgotten as in the old rhetoric of reform; what is much worse, they are not seen.

Racism and Health: Modeling Behavior• Middle and upper class – “concerted cultivation"

designed to draw out children's talents and skills,

• Poor and working-class families - "the accomplishment of natural growth," in which a child's development unfolds spontaneously—as long as basic comfort, food, and shelter are provided

• Critically important to development and accomplishment and approach to healthcare

Kressin Model of Health DisparityConceptual Model for Treatment Disparity

Kressin, NR, Petersen LA. Racial variations in cardiac procedures: a review of the literature and prescription for future research. Ann Intern Med 2001;135:352–66.

Patient Factors

Sociodemographic / ComorbiditiesHealth BeliefsHealth Knowledge

Symptom Distress / QOL

Institutional Factors

Healthcare System Trust

Provider Factors

TrustCommunication

Patient

Treatment Decision

Treatment Acceptance

Patient

Outcomes

Survival Disease Status

The ACTS Intervention

A

C

T

S

ttitudes About Chemotherapy

ommunication

reatment Information

upport

The ACTS Intervention

Psycho educational ACTS (adherence, communication, treatment, support) intervention for African American women undergoing first

chemotherapy

30 minute multi-media intervention of support, education, communication coaching and treatment explanation according to

individual pathology

Interventionist was a race matchedbreast cancer survivor

Findings

54% of all women, regardless of treatment arm, had some dose reduction, delay (> 7 days ) or early termination of chemotherapy.

58% had some delay including less than 7 days

48% of the sample did not receive 85% (appropriate dose intensity) of prescribed chemotherapy in prescribed timeframe.

Dose Intensity as per Projected Timeline

Findings

. Symptom incidence, distress and cancer related distress are associated with and predictive of dose reduction and early chemotherapy cessation.

Symptom and Distress Scores

Scales Time Points Total Mean ± SD

Symptom Distress Scores (SDS)0-65

Baseline 21.7 ± 6.4

Midpoint 26.0 ± 8.4

Completion 26.6 ± 7.7

Total Number of Symptoms0 -11

Baseline 6.0 ± 3.7

Midpoint 9.8 ± 4.2

Completion 9.9 ± 4.0

Cancer Related Distress0-10

Baseline 4.5 ± 2.6

Midpoint 3.7 ± 2.9

Completion 3.7 ± 2.7

Findings

. Dose reductions, delays and early termination were correlated with symptom incidence and distress.

Multivariate Binary Regression Model

Variables b p OR

95% CI for OR

Lower

Upper

Any delay or dose reduction

Symptom Distress 0.14 <0.01 1.15 1.05 1.26

Number of Symptoms 0.17 <0.01 1.19 1.01 1.32

Early Cessation

Symptom Distress 0.16 <0.01 1.17 1.04 1.32

Multivariate Binary Regression Predictors of Poor Chemotherapy Intensity

Interpersonal Processes of Care

The rating of clinical encounters according to scale

1. Invest in the Beginning

2. Elicit patient preference

3. Demonstrate empathy

4. Invest in the end

SEMOARS

SEMOARS

Summary• Our past and ongoing work assessing over 200 African American women with

breast cancer , and the work of others suggests that understanding of tumor, symptom incidence, cancer related distress and underlying beliefs in self efficacy are important factors contributing to racial disparity in dose reduction and early therapy termination.

• Clinical delays are associated with greater symptom distress and lower patient general self-efficacy, greater health care system distrust, worse interpersonal processes of care, greater number of reported symptoms, and better quality of life.

• Early chemotherapy cessation is associated with lower ratings of beliefs in the necessity of chemotherapy and greater symptom distress.

• The clinical encounter may be an important contributory factor in outcome disparity.

SEMOARS

Discussion –Personalized Approach

Consider needs according to Social Determinants of Health to Ensure not just equal treatment but equity in treatment

50

How to Make Real Change

• Start the message with a value or “big idea” that virtually everyone shares related to the issue

• Identify the barriers standing in the way of that big idea

• Provide the data that document the consequences of the barriers

• Mandate strategies to address the barriers

51

How to Make Real Change

• Start the message with a value, moral belief or “big idea” that virtually everyone shares related to the issue

• No disparity in breast cancer treatment, symptom management or end of life care

• Meaningful to administration and payers

• Quality guidelines or reimbursement mandates

• Examples: • Equitable dose intensity (85% of prescribed chemotherapy in specified timeframe ) vs. Quality

of Life for adjuvant breast cancer chemotherapy

• Use of chemotherapy in the last 30 days of life vs. Symptom distress at end of life

52

How to Make Real Change

• Identify the barriers standing in the way of that big idea

• Implicit Bias• Lowered Expectation

• Resistance to acknowledgement

• Lack of Empathy

• Lack of cultural knowledge

Lowered Expectations–Quiet Racism

“When you lower expectations …I say it is discrimination to require anything less -- the soft bigotry of low expectations. . . .

What is the goal of Cultural Competence?

To improve the ability of health care providers and the health care system to effectively communicate and care for

patients from diverse social and cultural backgrounds

Emerged in response to acknowledgement of impact of culture on clinical care, and increasing patient diversity

Evolution of Cultural Competence

Center for Health Policy and Ethics

• “Cultural competence is the ability of health care professionals to communicate with and effectively provide high-quality care to patients from diverse sociocultural backgrounds; aspects of diversity include—but go beyond—race, ethnicity, gender, sexual orientation, religion, and country of origin.”

• Previous “categorical approach”: “attitudes, values, beliefs, and behaviors of specific cultural groups”

Betancourt 2010

Why are Providers and Staff Resistant?

They want to do the right thing, and understand that if they don’t it impacts quality, but…

• They don’t want to be lectured with the assumption they are broken and need to be fixed

• They view cultural competence as:

• Something that just increases visit time, not a skill set

• Soft-science, not a set of skills

• They want “just the facts” about cultures

Can I Leave my bias at the door?

Two Competing Bias Theories

1. Freudian Psychology - the human mind defends itself against the discomfort of guilt by denying or refusing to recognize those ideas, wishes and beliefs that conflict with what the individual has learned is good or right.

2. Cognitive Psychology – culture (including the media and an individual’s peers, and authority figures) transmits certain beliefs and preferences. Because these beliefs are so much a part of the culture, they are not experienced as explicit lessons. Instead, they seem part of the individual’s rational ordering of the world.

A. Social Cognition Theory establishes that mental categories and personal experiences become “hard-wired” into cognitive functioning.

B. As a result, human biases can be seen as evolutionarily adaptive behaviors.

What Activates Our Biases?

Our biases are most likely to be activated by four key conditions.

They are:

▪ stress▪ time constraints

▪ multi-tasking▪ need for closure

Evidence Based Strategies

Empathy

Check and challenge attribution and argument

How to Teach Empathy Re: the Poor and Underserved

• We desire a more nuanced understanding of the causes and implications of poverty and want medical professionals to feel a sense of duty to help those who are underserved.

• (1) increasing the socioeconomic diversity of the work force

• (2) increasing trainees’ empathetic understanding of poverty through any of a variety of efforts (e.g., service work , reflective exercises, health policy and public health education, community outreach)

• (3) increasing the number of positive role models for trainees.

• (4) reminding students of their ethical commitments to all patients

How to Teach Empathy Re: the Poor and Underserved

Positive Experiences

• Clinical mentors much more powerful than professors in modling attitiudestoward poor, underserved.• “Frequent flyers”

• Underserved community healthcare with a caring, professional staff

• All patients treated with dignity and respect- part of the healthcare culture.

64

How to Make Real Change

• Start the message with a value or “big idea” that virtually everyone shares related to the issue

• Identify the barriers standing in the way of that big idea

• Provide data that document the consequences of the barriers

• Mandate strategies to address the barriers - Clarify, Simplify,

Social Determinates of Health Race, Income, Education, Sex,

Neighborhood, Exposure to stress

Biology, Genomics

Genomics

Symptom Experience and Management

Illness Experience - Qualitative

Chemotherapy Prescribed/Received

Dose holds, delays, reductions and early cessation

Quality Survivorship

Women receiving breast cancer chemotherapy

Chemotherapy

Provide data that document the consequences of the barriers –Symptom Experience, Management, Outcomes and Advocacy according to Social Determinants of Health -SEMOARS Study

• Know Why

• Publish

• Present

• Speak up – “Clarify, Simplify, Amplify and Repeat”

Mandate strategies to address the barriers

Our Team

• Catherine Bender, PhD, FAAN

• Adam Brufsky MD, PhD

• Barbara Given, PhD, RN,FAAN

• Susan Sereika, PhD

• Paula Sherwood, PhD, RN,FAAN

• Sandra Underwood, PhD, RN,FAAN

• Jacqueline Simon

• Kathleen Slavish, BA

Funding

Susan G. Komen Foundation. POP33008NCI-KO7 CA 100 588

American Cancer Society, RSGT-09-150-01-CPHPS

Center for Research University of Pittsburgh

School of Nursing

Patients

Referencesmros@pitt.edu