Long Term Quality
of Life in Black
Women Breast
Cancer Survivors
Margaret Barton-Burke, Ph.D., R.N.
Mary Ann Lee Endowed Professor of
Oncology Nursing
University of Missouri-St. Louis
and
Research Scientist
Siteman Cancer Institute
St. Louis, Missouri
Acknowledgement
• Susan G. Komen for the Cure Foundation
DISP0707596
• Mary Ann Lee Professorship Endowment for
Oncology Nursing
• Lu Yunlin, PhD(c)
Doctoral Candidate, UMSL
• Jing Wang, PhD
Associate Professor, St. Louis University
An Incomplete Picture
I have a fear that I may forget it by the end of the session here, I’m
going to offer some perspective of African American women and our
history. We are taught, this has not been the only challenge that
we’ve ever met. We’ve had to meet challenges and I’m a child of the
South. So we were born in a segregated era, Jim Crow era. Those
of us that are older probably even more. So in my generation we
were the first to integrate for jobs and the first African Americans to
be in this decision making but not that we have sought to challenge
it or struggle, they just come our way. They’re just part of our
background. They’re part of what we had to face in being in
America and any place else and so we’ve been taught, our mothers
taught us how to be independent, how to struggle. Our mothers
struggled whatever the situation was. They might have been maids,
they have been domestic workers, … but they struggled always to
make sure that we had and that we were given the best that they
could offer and somehow to even confront the other system. … So
we are always in a climate of people, of having to struggle for what
we get. So if our attitudes and we’re very spiritual people, we are
known to be spiritual and rely on God … and so this is part of our
heritage and so the struggle against cancer like I told you, this was
only one struggle for me. Granted it wasn’t the most challenging but
… So I knew how to marshal my forces. I knew to how to … my
emotions and my body, we’re going to war.
Initial Researchers (Boston)
Margaret Barton-Burke, PhD, RN
Felicia P. Wiltz, PhD
The Advisory Board
The Advisory Board
• Dimock Community
Health Center
• Reverend Gloria
White Hammond, MD
• Barbara Bond,
LICSW, EdD
• Carol Brayboy
• Lula Christopher
• Grace Clark, RN
• Alice Coombs, MD
• Kalya J. Hamlett
• Carol Kelley
• Patricia Marshall,
RNCS
• Andrea E. Reid, MD
• Marybeth Singer,
APRN
• Hope White
• Karen A. Burns White
Initial Team (Ft. Worth)
Co-investigators
• Felicia P. Wiltz, PhD
• Aline Gubrium, Ph.D.
Honors Students
• Amanda Sweet
RA
• Amanda Worcester
• Courtney Proctor
• Camille Swagerty
Umass Amherst Nursing
Student
• Marangeliz Medrano
Survivors
• Little Lala
• Tina
• Missy
• Victoria
• Shirley
• Carol
• Marsha
• Mary
• Patricia
• Grace
• 8 other women
BWBCS Project Collaborations
(St. Louis)
• The Sorors
• The Churches …
Spiritual Steps
• The Board of Alderman
for the City of St. Louis
• The Office of Minority
Health & Senior
Services for the State of
Missouri
• Local ONS Chapter &
APN group
• Build Capacity:
– Honors Students
– MBA students for our 501
C3 status
– Grad & Undergrad
student volunteers
• Endowed Professor in
Policy
• Social Security Office
• Who Could You Think
to Collaborate With ….
By Design not Default?
Black Women Breast Cancer Survivors Project
Long Term Quality of Life in Black Women Breast Cancer
Survivors
Funded by
Sponsored by
University of
Massachusetts Amherst
School of Nursing
PI = Dr. Margaret
Barton-Burke
Mary Ann Lee
Professor of
Oncology Nursing
University of Missouri
– St. Louis
PM = Ms. Ebony
Smith, M.P.H.
Definition
The term black women is
being used to include
women of the African
Diaspora; including
those of African
descent, Caribbean
ancestry as well as
descendents of United
States slaves.
Study Aims
• Report findings of 4 HRQoL instruments
–
–
–
–
Functional Assessment of Cancer Treatment-B (FACT-B)
Rand SF-36
Ladder of Life scale
Life Stress Scale
• Identify socio-demographic & clinical effect
modifiers in 4 HRQoL instruments
• Estimate nature & significance of relationships
between non-medical life stressors
• Determine cultural appropriateness of 4 HRQoL
instruments in a population of long-term BWBCS
using qualitative methods
Dimensions of the Breast Cancer Experience for Black Women
Physical Dimension
Psychological
Dimension
Social
Dimension
Spiritual/Existential Dimension
3/10/2016
Economic
Dimension
Methodology
• 3 year cross sectional descriptive design
• Mixed method data collection protocol
• Innovation:
– Investigating explicitly cultural/ethnic variations of
HRQoL
– Exploring long-term sequelae of BC
– Developing a model of care for BWBCS & long term
survivorship
• Snowball technique
• Used trifold flyer strategically placed around the
community
• Boston -> Ft. Worth -> St. Louis
Demographics
• 140 BWBCS: 50% increase
over anticipated recruitment
plan
• Average age 61 years
• Average survivorship 11
years
• 79% AA & 15% African
• 56% Missouri ; 19%
Massachusetts; 19% Texas;
6% other states
• 95% urban & suburban
communities
• 40% married/committed
relationship; 33% divorced/
separated; 16% never
married
• 40% married/committed
relationship; 33% divorced/
separated; 16% never
married
• 48% high school/GED &
48% college degree
• 48% Baptist as their religion.
• Majority employed; 31%
retired; 11% unemployed
• 73% over 50; no family
history of BC; hx
pregnancies; had not been
tested for the BRCa gene.
• Of those tested, 7% tested
positive for BRCa gene
– No questions asked about triple
negative BC
Findings: FACT-B
• Physical Dimension Majority BWBCS scored
“not at all” or “a little bit”
Fatigue = “I have a lack of
energy” 81% had a little
bit -> very much
• Social Dimension –
Majority BWBCS scored
“quite a bit” or very
much
Except: 38% not satisfied
with sex life; 34%
satisfied
• 97.53% RR
• Physical Well Being &
Emotional Well Being
mean scores were
lower than
• Social Well Being &
Functional Well Being
mean scores
Findings: SF-36
• Physical Dimension Fatigue Majority
63% had a lot of energy
during the past 4 weeks
83% felt worn out during
the past 4 weeks
99% felt tired during the
past 4 weeks
SF-36 (skewedness)
Mean FACT-B scores stratified
by neighborhood stress
Findings: Urban Life Stress Scale
•
•
•
•
•
•
•
•
•
•
•
•
•
•
•
Money
Housing
Job
Education
Gang Activity
Drugs/Alcohol
Crime
Racism/Discrimination
Physical Health
Death of Someone Close
Raising Children
Marriage/Romantic
Relationships
Other Family Problems
Social Life
Other Life Stressors
Which Caused Most
Stress?
• Money
• Job
• Death of Someone
Close
• Physical Health
• Raising Children
Urban Life Stress Scale
(skewedness)
Urban Life Stress Scale
Money/Finances
Findings: Ladder of Life
Conclusions
• Findings obtained FACT B,
SF-36, Urban Life Stress
Scale, & Ladder of Life
(VAS).
• Findings FACT B & SF-36
analyzed for what was
reported & questions not
answered
• Urban Life Stress Scale may
be complex measure that
does not adequately
measure urban stress of the
lives of BWBCS
• Ladder of Life Scale - a VAS
maybe the types & kind of
tool to use for this type of
research
• Post hoc analysis planned
for this fall to run correlations
between all data; factor
analysis
• Conduct study with rural
population
Conclusions
• Perhaps – not culturally sensitive
• Perhaps – did not measure BWBC
survivorship
• Perhaps – types and kinds of measures
were not appropriate for long term
survivors
• Need different measures for long term
survivors (Ganz)
• European-American model of
understanding & treating BC lacks
relevance for black women
The BWBCS Project
The Black Women Breast Cancer Survivor
(BWBCS) Project is a participatory action
research project where we conduct
Afrocentric research and provide
Afrocentric evidence-based programming
guided by black women breast cancer
survivors.
Black Women Breast Cancer
Survivor Project
THANK YOU FOR
YOUR ATTENTION
Questions?
3/10/2016