Long Term Quality of Life in Black Women Breast Cancer Survivors

1. 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 NursingUniversity of Missouri-St. LouisandResearch Scientist Siteman Cancer InstituteSt. Louis, Missouri

2. 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

3. An Incomplete Picture

5. 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.

6. 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 Researchers (Boston)Margaret Barton-Burke, PhD, RNFelicia P. Wiltz, PhD

7. 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 Initial Team (Ft. Worth)

8. 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?

9. 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

10. PI = Dr. Margaret Barton-Burke Mary Ann Lee Professor of Oncology Nursing University of Missouri – St. Louis PM = Ms. Ebony Smith, M.P.H.

11. 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.

12. 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

13. Dimensions of the Breast Cancer Experience for Black Women Physical Dimension Economic Dimension Psychological Dimension Social Dimension Spiritual/Existential Dimension

14. 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

15. 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

16. 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

17. 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

18. SF-36 (skewedness)

19. Mean FACT-B scores stratified by neighborhood stress

20. 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

21. Urban Life Stress Scale (skewedness)

22. Urban Life Stress ScaleMoney/Finances

23. Findings: Ladder of Life

24. 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

25. 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

26. 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.

28. Black Women Breast Cancer Survivor Project

29. Questions? THANK YOU FOR YOUR ATTENTION