Long Term Quality Long Term Quality of Life in Black of Life in Black Women Breast Women Breast Cancer SurvivorsCancer Survivors

Margaret Barton-Burke, Ph.D., R.N. Mary Ann Lee Endowed Professor of

Oncology NursingUniversity of Missouri-St. Louis

andResearch Scientist

Siteman Cancer InstituteSt. 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• Dimock Community

Health Center• Reverend Gloria

White Hammond, MD• Barbara Bond,

LICSW, EdD• Carol Brayboy• Lula Christopher• Grace Clark, RN• Alice Coombs, MD

The Advisory Board

• 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?

Sponsored by University of

Massachusetts AmherstSchool of Nursing

Black Women Breast Cancer Survivors ProjectLong Term Quality of Life in Black Women Breast Cancer

Survivors

Funded by

PI = Dr. Margaret Barton-BurkeMary Ann Lee Professor of

Oncology NursingUniversity of Missouri

– St. Louis

PM = Ms. Ebony Smith, M.P.H.

DefinitionDefinition

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 AimsStudy 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

04/19/23

Physical Dimension

PsychologicalDimension

SocialDimension

Economic Dimension

Spiritual/Existential Dimension

Dimensions of the Breast Cancer Experience for Black Women

MethodologyMethodology• 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-BFindings: 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-36Findings: 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: Findings: Urban Life Stress ScaleUrban 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 ScaleMoney/Finances

Findings: Ladder of LifeFindings: 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

ConclusionsConclusions

• 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

04/19/23

THANK YOU FOR YOUR ATTENTION

Questions?