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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
