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Improving Breast Cancer Outcomes
in Communities of Color:
Steps toward Equity
Hayley S. Thompson, PhD
Associate Center Director, Community Outreach and
Engagement, Karmanos Cancer Institute
Associate Professor, Department of Oncology, Wayne
State University School of Medicine
Detroit, Michigan
• Review racial/ethnic disparities in breast
cancer outcomes.
• Define and frame problem in terms of health
equity.
• Discuss potential solutions.
Objectives
• National Cancer Institute.
– Cancer health disparities are adverse differences between
certain population groups in cancer measures, such as
incidence, prevalence, morbidity, mortality, survivorship,
and quality of life after cancer treatment, burden of
cancer or related health conditions, screening rates, and
stage at diagnosis.
Cancer health disparities
Breast cancer in the U.S.:
Incidence
Breast cancer in the U.S.:
Stage at diagnosis
Breast cancer in the U.S.:
Mortality
Five year relative survival,
2005 – 2011
(Howlader et al., 2015; ACS Cancer Facts & Figures for African Americans, 2016-2018)
The cancer care continuum
Risk
Assessment/
Management
Primary
Prevention
Detection Diagnosis Cancer or
Precursor
Treatment
Recurrence
Surveillance
End-of –Life
Care
• Age
• Family hx
•Exposure hx
• Genetics
• Lifestyle
•Screening hx
• Lifestyle
counseling
• Chemopre-
vention
• Screening-
asymptomatic
• Appropriate
testing
(symptomatic)
• Imaging
• Biopsy
•Repeat
exams
• Lab tests
• Excision
• Surgery
• Radiation
•Chemo-
therapy
• Palliation
• Testing
•Follow-up care
• Palliation
•Survivorship
care
• Palliative care
•Advanced care
planning
•Bereavement
support
Disparities along the continuum
Risk
Assessment/Management
Detection Cancer or Precursor
Treatment
Recurrence Surveillance
AfAm women less likely to
participate in BRCA counseling
and testing compared to white
women.
(Armstrong et al., 2005;
Armstrong et al., 2003)
Latinas age 40+ years less
likely to report a mammo-
gram in the past 2 years
compared to white and AfAm
women.
(2015 National Health
Interview Survey)
African Americans and Latina
breast cancer patients less
likely to receive adjuvant
therapy or receive lower dose.
(Bickell et al., 2006,; Griggs et
al., 2003; Hershman et al.,
2005)
African American and Latina
survivors are less likely to be
adherent to guideline
surveillance.
(Lash et al., 2007; Field et al.,
2007; Schapira et al., 2000;
Keating et al., 2006;
Mandelblatt et al., 2006)
How do we make sense of
these disparities?
• Some causes are genetic/biological.
– More aggressive disease in African American women
(triple negative breast cancer).
– Latinas are likely to be diagnosed with larger tumors that
are hormone receptor negative.
– Such factors do not fully explain disparities.
– Disparities in mortality remained even when adjusting for
age at diagnosis, stage and grade of the tumor, year of
diagnosis, and socioeconomic status.
(Menashe et al., 2009, JNCI)
•NCI: “adverse differences.”
•Centers for Disease Control (CDC).
– Health disparities are preventable differences in the burden
of disease, injury, violence, or in opportunities to achieve
optimal health experienced by socially disadvantaged racial,
ethnic, and other population groups, and communities.
Evolving definition of
disparities
•Healthy People 2020.
– A health disparity is a health difference that is closely linked
with social, economic, and/or environmental disadvantage.
– Health disparities adversely affect groups of people who have
systematically experienced greater obstacles to health based
on their racial or ethnic group; religion; socioeconomic status;
gender; age; mental health; cognitive, sensory, or physical
disability; sexual orientation or gender identity; geographic
location; or other characteristics historically linked to
discrimination or exclusion.
Evolving definition of
disparities
•Health inequity.
– Differences in health that are not only unnecessary and
avoidable but are unfair and unjust.
– Due to difference in the distribution or allocation of a
resource between groups.
•Health is not only determined at the individual level of
genetics, biology, or individual behavior but at broader
societal levels (social determinants).
Focus on inequity
(Centers for Disease Control; Boston Public Health Commission)
Downstream determinants
 Downstream or
proximal
determinants:
Factors that are
temporally and
spatially close to
health effects.
• Examples of downstream
determinants:
o Biological/genetic factors
(e.g., gene mutations,
inflammation).
o Behavioral factors (e.g.,
cancer screening,
smoking, physical
activity).
o Psychological factors (e.g.,
attitudes mood).
• Expressed on the individual
(intrapersonal) level.
(Braveman et al., 2011)
Upstream determinants
 Downstream or
proximal
determinants:
Factors that are
temporally and
spatially close to
health effects.
 Upstream or distal
determinants:
Fundamental causes that
set in motion causal
pathways leading to
health effects through
downstream factors.
(Braveman et al., 2011)
Social-Ecological Model
•A framework for
understanding how
upstream factors shape
downstream factors
(social determinants).
•Acknowledges multiple
levels of influence on
health.
Societal
History, ideology,
political structure,
social hierarchies.
Community
Relationships among
organizations,
institutions, and
informational networks
within defined
boundaries. Can also
refer to neighborhood
and include
physical/built
environment.
Policy
Local, state, national,
and global laws and
policies.
Interpersonal
Social networks and
support systems include
family members,
coworkers, and friends.
Can also include
healthcare providers.
Individual
Knowledge, attitudes,
behavior,
developmental history,
demographic
characteristics (gender,
race/ethnicity,
economic status), and
health literacy.
Institutional
Characteristics of social
institutions with
organizational
characteristics and
operational rules and
regulations.
Moore et al., 2015
• “Differential access to the goods,
services, and opportunities of
society by race.
Institutionalized racism is normative,
sometimes legalized, and often
manifests as inherited
disadvantage. It is structural,
having been codified in our
institutions of custom, practice,
and law, so there need not be an
identifiable perpetrator.
Institutionalized racism manifests
itself both in material conditions
and in access to power.”
Racism as a societal factor
Institutionalized
racism
(societal)
Jones, 2000
• Legalization of a racial caste system
following Emancipation and
Reconstruction, 1870s – 1960s.
• Separate but equal.
• Outlawed by Civil Rights Act of
1964.
Public policy
• Jim Crow birthplace was independently
associated ER- breast cancer only for the
AfAm women born before 1965 (even
controlling for SES).
• Effect not observed for AfAm women born
after 1965 or white women regardless of
year of birth.
Jim Crow and breast
cancer
• Racial segregation: the physical separation of members of one
racial group from those of another group.
• As of 2010, approximately 1/3 of African Americans live in a
hypersegregated area (meeting criteria across five dimensions of
segregation).
(Massey & Tannen, 2015)
Community
Institutionalized
racism
Jim Crow
legislation
Racial segregation
(community)
• Studies report that breast cancer mortality among
AfAm women increased along with racial
segregation.
• Counterintuitive findings have also been reported.
– Greater AfAm segregation has ben associated with lower
breast cancer-specific mortality.
– There may be an enclave or ethnic density effect that is
protective.
(Russell et al., 2011, 2013; Warner et al, 2010; Bemanian et al., 2017).
Racial segregation and
breast cancer
Interpersonal
• Racial discrimination is
multidimensional.
• Everyday discrimination.
– Chronic or episodic interpersonal
discrimination but relatively minor.
– Example items: “People act as if they
think you are not intelligent”; “People
act as if they are better than you.’’
– Frequency.
• Major experiences of
discrimination.
– Acute experiences, major life events.
– Ever treated unfairly due to race on
the job, in housing, and by the police.
(Williams et al., 1997)
• In a longitudinal cohort study, AfAm women younger
than 50 years of age who reported higher everyday
discrimination (summary variable) demonstrated
higher breast cancer incidence.
• AfAm women who reported discrimination in three
areas (police, housing, and job) were more likely to
develop breast cancer than were women who did
not report discrimination in any domain.
Racial discrimination and
cancer
(Taylor et al., 2007)
• Area-level discrimination:
the proportion of total
Google searches in a
designated area
containing the n-word.
• Higher proportion of
racist searches in a given
area was associated with
AfAm cancer-specific
mortality in that area.
(Chae et al., 2015)
Area level-racism as a
proxy for racial
discrimination
• Among African American cancer patients (84% breast
cancer), oncologists who demonstrated higher
implicit bias had shorter interactions with patients.
• Patients and independent observers rated these
oncologists’ communication as less patient-centered
and supportive.
• Oncologist implicit bias was associated with…
– less patient confidence in recommended treatments.
– greater perceived difficulty completing them.
Racial discrimination and
cancer treatment
(Penner et al., 2007)
• Less access to care and supportive
services (e.g., lower screening
rates, clinical delays, less post-
treatment surveillance).
• Cultural norms that have a
defensive function (e.g., medical
mistrust, cancer care avoidance,
higher quality interactions for
same-race providers).
• Behavioral (e.g., smoking) and
affective (e.g., depression)
responses to stressors that
increase cancer risk and delay care.
Examples of pathways from societal to
individual determinants and cancer
outcomes
• Health equity means that
everyone has a fair and just
opportunity to be healthier.
• This requires removing obstacles
to health such as poverty,
discrimination, and their
consequences, including
powerlessness and lack of access
to good jobs with fair pay,
quality education and housing,
safe environments, and health
care.
Equity
Robert Wood Johnson Foundation & UCSF, 2017
• Target the multiple levels of influence that affect
health.
• Interventions occur at a number of levels
simultaneously or in close succession.
• Implementation can be complex.
• Challenging to evaluate the synergistic effects
between levels.
• Few examples of multilevel interventions in breast
cancer, although promising outcomes in other
cancers.
(Paskett et al., 2016; Davis et al., 2011; Allicock et al., 2010)
Multilevel strategies to
achieve equity
• The Multilevel Intervention to Increase Latina
Participation in Mammography Screening study
(Fortaleza Latina).
Example of a multilevel
strategy
(Coronado et al., 2016)
• Boston Racial and Ethnic Approaches to Community
Health (REACH) 2010 Breast and Cervical Cancer
Coalition.
Example of a multilevel
strategy
(Bigby et al., 2003; Clark et al., 2009)
Key steps to advancing
health equity
Robert Wood Johnson Foundation & UCSF, 2017
• “Identify important disparities that are of concern to
key stakeholders, especially those affected.”
• Community members can play a vital role at various
levels of intervention development and
implementation.
• Can ensure that interventions are tailored to unique
local culture/environment.
The involvement of
community stakeholders
Model of community
stakeholder engagement
• Three new Councils in Oakland, Macomb, and Genesee counties
• Currently ~ 80 members across 9 Councils.
Western Wayne
Family Health
Center - Inkster
Karmanos Cancer
Institute –
Midtown, Detroit
Project Lead: H.S. Thompson, Ph.D. Funded by PCORI Eugene Washington Engagement
Award (#2971-WSUSM); DMC (Detroit Medical Center) Foundation Health Education and
Community Benefit Grant; (PCORI) Eugene Washington Engagement Award (6252-WSU).
Michigan Cancer HealthLink Cancer Action Councils (CACs)
(formerly Detroit HealthLink for Equity in Cancer Care)
ACCESS -
Dearborn
LGBT-Detroit
VODI – Conner
Creek
• Capacity building.
– Council members completed a research-focused
curriculum.
• Evidence prioritization.
– Use interactive exercises to identify research priorities and
develop research questions.
• Develop research partnerships with academic
investigators.
HealthLink activities
• Currently preparing to work with Councils to refine a
predictive model of quality of life among African American
cancer survivors based on Social-Ecological Model.
• Focus on stressors linked to racial group membership that
result from interpersonal, institutionalized, and structural
racism and socioeconomic adversity in the U.S.
• Test the model in a large-scale study of 600 AfAm survivors.
• Results will guide targeted, multilevel interventions to
improve survivorship outcomes.
Disparities in cancer
survivorship

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Improving Breast Cancer Outcomes for All

  • 1. Improving Breast Cancer Outcomes in Communities of Color: Steps toward Equity Hayley S. Thompson, PhD Associate Center Director, Community Outreach and Engagement, Karmanos Cancer Institute Associate Professor, Department of Oncology, Wayne State University School of Medicine Detroit, Michigan
  • 2. • Review racial/ethnic disparities in breast cancer outcomes. • Define and frame problem in terms of health equity. • Discuss potential solutions. Objectives
  • 3. • National Cancer Institute. – Cancer health disparities are adverse differences between certain population groups in cancer measures, such as incidence, prevalence, morbidity, mortality, survivorship, and quality of life after cancer treatment, burden of cancer or related health conditions, screening rates, and stage at diagnosis. Cancer health disparities
  • 4. Breast cancer in the U.S.: Incidence
  • 5. Breast cancer in the U.S.: Stage at diagnosis
  • 6. Breast cancer in the U.S.: Mortality
  • 7. Five year relative survival, 2005 – 2011 (Howlader et al., 2015; ACS Cancer Facts & Figures for African Americans, 2016-2018)
  • 8. The cancer care continuum Risk Assessment/ Management Primary Prevention Detection Diagnosis Cancer or Precursor Treatment Recurrence Surveillance End-of –Life Care • Age • Family hx •Exposure hx • Genetics • Lifestyle •Screening hx • Lifestyle counseling • Chemopre- vention • Screening- asymptomatic • Appropriate testing (symptomatic) • Imaging • Biopsy •Repeat exams • Lab tests • Excision • Surgery • Radiation •Chemo- therapy • Palliation • Testing •Follow-up care • Palliation •Survivorship care • Palliative care •Advanced care planning •Bereavement support
  • 9. Disparities along the continuum Risk Assessment/Management Detection Cancer or Precursor Treatment Recurrence Surveillance AfAm women less likely to participate in BRCA counseling and testing compared to white women. (Armstrong et al., 2005; Armstrong et al., 2003) Latinas age 40+ years less likely to report a mammo- gram in the past 2 years compared to white and AfAm women. (2015 National Health Interview Survey) African Americans and Latina breast cancer patients less likely to receive adjuvant therapy or receive lower dose. (Bickell et al., 2006,; Griggs et al., 2003; Hershman et al., 2005) African American and Latina survivors are less likely to be adherent to guideline surveillance. (Lash et al., 2007; Field et al., 2007; Schapira et al., 2000; Keating et al., 2006; Mandelblatt et al., 2006)
  • 10. How do we make sense of these disparities? • Some causes are genetic/biological. – More aggressive disease in African American women (triple negative breast cancer). – Latinas are likely to be diagnosed with larger tumors that are hormone receptor negative. – Such factors do not fully explain disparities. – Disparities in mortality remained even when adjusting for age at diagnosis, stage and grade of the tumor, year of diagnosis, and socioeconomic status. (Menashe et al., 2009, JNCI)
  • 11. •NCI: “adverse differences.” •Centers for Disease Control (CDC). – Health disparities are preventable differences in the burden of disease, injury, violence, or in opportunities to achieve optimal health experienced by socially disadvantaged racial, ethnic, and other population groups, and communities. Evolving definition of disparities
  • 12. •Healthy People 2020. – A health disparity is a health difference that is closely linked with social, economic, and/or environmental disadvantage. – Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion. Evolving definition of disparities
  • 13. •Health inequity. – Differences in health that are not only unnecessary and avoidable but are unfair and unjust. – Due to difference in the distribution or allocation of a resource between groups. •Health is not only determined at the individual level of genetics, biology, or individual behavior but at broader societal levels (social determinants). Focus on inequity (Centers for Disease Control; Boston Public Health Commission)
  • 14. Downstream determinants  Downstream or proximal determinants: Factors that are temporally and spatially close to health effects. • Examples of downstream determinants: o Biological/genetic factors (e.g., gene mutations, inflammation). o Behavioral factors (e.g., cancer screening, smoking, physical activity). o Psychological factors (e.g., attitudes mood). • Expressed on the individual (intrapersonal) level. (Braveman et al., 2011)
  • 15. Upstream determinants  Downstream or proximal determinants: Factors that are temporally and spatially close to health effects.  Upstream or distal determinants: Fundamental causes that set in motion causal pathways leading to health effects through downstream factors. (Braveman et al., 2011)
  • 16. Social-Ecological Model •A framework for understanding how upstream factors shape downstream factors (social determinants). •Acknowledges multiple levels of influence on health.
  • 17. Societal History, ideology, political structure, social hierarchies. Community Relationships among organizations, institutions, and informational networks within defined boundaries. Can also refer to neighborhood and include physical/built environment. Policy Local, state, national, and global laws and policies. Interpersonal Social networks and support systems include family members, coworkers, and friends. Can also include healthcare providers. Individual Knowledge, attitudes, behavior, developmental history, demographic characteristics (gender, race/ethnicity, economic status), and health literacy. Institutional Characteristics of social institutions with organizational characteristics and operational rules and regulations. Moore et al., 2015
  • 18. • “Differential access to the goods, services, and opportunities of society by race. Institutionalized racism is normative, sometimes legalized, and often manifests as inherited disadvantage. It is structural, having been codified in our institutions of custom, practice, and law, so there need not be an identifiable perpetrator. Institutionalized racism manifests itself both in material conditions and in access to power.” Racism as a societal factor Institutionalized racism (societal) Jones, 2000
  • 19. • Legalization of a racial caste system following Emancipation and Reconstruction, 1870s – 1960s. • Separate but equal. • Outlawed by Civil Rights Act of 1964. Public policy
  • 20. • Jim Crow birthplace was independently associated ER- breast cancer only for the AfAm women born before 1965 (even controlling for SES). • Effect not observed for AfAm women born after 1965 or white women regardless of year of birth. Jim Crow and breast cancer
  • 21. • Racial segregation: the physical separation of members of one racial group from those of another group. • As of 2010, approximately 1/3 of African Americans live in a hypersegregated area (meeting criteria across five dimensions of segregation). (Massey & Tannen, 2015) Community Institutionalized racism Jim Crow legislation Racial segregation (community)
  • 22. • Studies report that breast cancer mortality among AfAm women increased along with racial segregation. • Counterintuitive findings have also been reported. – Greater AfAm segregation has ben associated with lower breast cancer-specific mortality. – There may be an enclave or ethnic density effect that is protective. (Russell et al., 2011, 2013; Warner et al, 2010; Bemanian et al., 2017). Racial segregation and breast cancer
  • 23. Interpersonal • Racial discrimination is multidimensional. • Everyday discrimination. – Chronic or episodic interpersonal discrimination but relatively minor. – Example items: “People act as if they think you are not intelligent”; “People act as if they are better than you.’’ – Frequency. • Major experiences of discrimination. – Acute experiences, major life events. – Ever treated unfairly due to race on the job, in housing, and by the police. (Williams et al., 1997)
  • 24. • In a longitudinal cohort study, AfAm women younger than 50 years of age who reported higher everyday discrimination (summary variable) demonstrated higher breast cancer incidence. • AfAm women who reported discrimination in three areas (police, housing, and job) were more likely to develop breast cancer than were women who did not report discrimination in any domain. Racial discrimination and cancer (Taylor et al., 2007)
  • 25. • Area-level discrimination: the proportion of total Google searches in a designated area containing the n-word. • Higher proportion of racist searches in a given area was associated with AfAm cancer-specific mortality in that area. (Chae et al., 2015) Area level-racism as a proxy for racial discrimination
  • 26. • Among African American cancer patients (84% breast cancer), oncologists who demonstrated higher implicit bias had shorter interactions with patients. • Patients and independent observers rated these oncologists’ communication as less patient-centered and supportive. • Oncologist implicit bias was associated with… – less patient confidence in recommended treatments. – greater perceived difficulty completing them. Racial discrimination and cancer treatment (Penner et al., 2007)
  • 27. • Less access to care and supportive services (e.g., lower screening rates, clinical delays, less post- treatment surveillance). • Cultural norms that have a defensive function (e.g., medical mistrust, cancer care avoidance, higher quality interactions for same-race providers). • Behavioral (e.g., smoking) and affective (e.g., depression) responses to stressors that increase cancer risk and delay care. Examples of pathways from societal to individual determinants and cancer outcomes
  • 28. • Health equity means that everyone has a fair and just opportunity to be healthier. • This requires removing obstacles to health such as poverty, discrimination, and their consequences, including powerlessness and lack of access to good jobs with fair pay, quality education and housing, safe environments, and health care. Equity Robert Wood Johnson Foundation & UCSF, 2017
  • 29. • Target the multiple levels of influence that affect health. • Interventions occur at a number of levels simultaneously or in close succession. • Implementation can be complex. • Challenging to evaluate the synergistic effects between levels. • Few examples of multilevel interventions in breast cancer, although promising outcomes in other cancers. (Paskett et al., 2016; Davis et al., 2011; Allicock et al., 2010) Multilevel strategies to achieve equity
  • 30. • The Multilevel Intervention to Increase Latina Participation in Mammography Screening study (Fortaleza Latina). Example of a multilevel strategy (Coronado et al., 2016)
  • 31. • Boston Racial and Ethnic Approaches to Community Health (REACH) 2010 Breast and Cervical Cancer Coalition. Example of a multilevel strategy (Bigby et al., 2003; Clark et al., 2009)
  • 32. Key steps to advancing health equity Robert Wood Johnson Foundation & UCSF, 2017
  • 33. • “Identify important disparities that are of concern to key stakeholders, especially those affected.” • Community members can play a vital role at various levels of intervention development and implementation. • Can ensure that interventions are tailored to unique local culture/environment. The involvement of community stakeholders
  • 34. Model of community stakeholder engagement • Three new Councils in Oakland, Macomb, and Genesee counties • Currently ~ 80 members across 9 Councils. Western Wayne Family Health Center - Inkster Karmanos Cancer Institute – Midtown, Detroit Project Lead: H.S. Thompson, Ph.D. Funded by PCORI Eugene Washington Engagement Award (#2971-WSUSM); DMC (Detroit Medical Center) Foundation Health Education and Community Benefit Grant; (PCORI) Eugene Washington Engagement Award (6252-WSU). Michigan Cancer HealthLink Cancer Action Councils (CACs) (formerly Detroit HealthLink for Equity in Cancer Care) ACCESS - Dearborn LGBT-Detroit VODI – Conner Creek
  • 35. • Capacity building. – Council members completed a research-focused curriculum. • Evidence prioritization. – Use interactive exercises to identify research priorities and develop research questions. • Develop research partnerships with academic investigators. HealthLink activities
  • 36. • Currently preparing to work with Councils to refine a predictive model of quality of life among African American cancer survivors based on Social-Ecological Model. • Focus on stressors linked to racial group membership that result from interpersonal, institutionalized, and structural racism and socioeconomic adversity in the U.S. • Test the model in a large-scale study of 600 AfAm survivors. • Results will guide targeted, multilevel interventions to improve survivorship outcomes. Disparities in cancer survivorship