The Influence of Race and Income on The Illness Experience of Breast Cancer. Margaret Quinn Rosenzweig PhD, FNP-BC, AOCNP , FAAN Professor, 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 1954 Brown vs. Board of Education Ruling Resistance to Integration Pre 1860 Slavery Up To 100 Years Jim Crow Laws and Segregation – Charity Care
Historical Perspective The National Medical Association Hill-Burton Act 1895 - led the efforts toward public 1945 - aided the uninsured but awareness of racial disparities in health perpetuated segregated health care Civil Rights Act Research Issues 1964 prohibited racial discrimination 1942-1990 - Tuskegee Syphilis Study in public accommodations, which 1945 – 200 - Henrietta Lacks included hospitals, and it made Perpetuated distrust “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.
Disparity and Outcomes – 40 years 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?
Racism as persistent issue in American fabric “ 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. 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 years Largely 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 Recommended Fully Adherent • Black (n=29), White (n=456) Chemotherapy to Chemo • Recommended treatments were 19/29 12/19 Black stage appropriate (52.8%) (63.2%) 256/456 N=209/256 White (53.9%) (81.3%) 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 .
Symptom Science 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. University of California – San Francisco School of Nursing
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 Women Categorized into Four Groups Two Breast Cancer Groups ❖ Race – Self report – White (W) / Black (B) ❖ Income – Self report – Low income (LI) or ❖ Early stage breast cancer receiving non low income (NLI) first chemotherapy ❖ US Health and Human Services Low Income Guidelines ❖ Advanced Stage / Metastatic breast cancer ❖ 2X2 prospective, mixed methods, – Anti-tumor or supportive therapies consecutive sampling between subjects ▪ Cross Sectional ▪ Between Subjects – Race and Income ▪ Dependent Variables – Symptoms, symptom distress and symptom management strategies
Methods – Instruments Functional Assessment of Cancer McCorkle Symptom Scripted Interview Therapy (FACT) Distress Scale (SDS) Functional, Social, Physical, Qualitative Analysis 13 Item self report Likert Emotional Subscales scale 27-item self-report Likert scored, 1-5 scale , 0-4. Higher scores = Worse Higher scores=Better QOL symptom distress
Results – Metastatic & Adjuvant Demographics (n=141) Race/ Age Married Completed Annual Annual Currently Income (Mean) High School Income Income Employed >50,000 <10,000 Black/High Income - X 11/20 49.3 9/20 17/20 10/12 Total 55% (SD 11.2) 45% 85% 83.3% (n=20) Black /Low Income - 55.8 3/33 20/33 X 16/33 5/33 Total (n=33) 48.5% 15% (SD 11.5) .09% 60.6% White /High Income 54.5 19/49 47/49 31/49 X 29/49 -Total (n=49) 59.1% (SD 10.1) 38% 95.9% 63.2% White/Low Income - 54.7 18/39 34/39 X 13/39 13/39 Total (n=39) 33.3% 33% (SD 10.1) 46% 87.1%
Results – Functional Assessment of Cancer Therapy (FACT) Range -36-108 - higher scores indicate higher quality of life 80 78 Black High Income 76 Black Low 74 Income 72 White High Income 70 White Low 68 Income 66 Early Stage Late Stage
Symptom Distress Scale Results – Symptom Distress Scale (SDS) Higher scores indicate worse symptom distress. (Range 13-65.0 ) 35 30 Black High Income 25 Black Low 20 Income White High 15 Income 10 White Low Income 5 0 Early Stage Late Stage
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 Income White – Low Income n=49 n=39 Early Stage Early Stage Support Strong Belief In Care and Treatment “he (MD) told me…jump in the water – there are a lot of people who “try to think positive and have a good rapport with your doctors.. will help you swim…and he was right.” that's very important. …half the battle is with your doctors… Participatory “it isn’t an easy road, it’s a long road but you can’t sit around and be “I have a friend who is an oncologist and I get on the internet and look depressed” things up…” Perception of Luck “If I have questions I have no problem talking to my doctor.” “I feel I’m lucky to be here.” Advanced Stage “I think I’ve been lucky.” Sense of Resentment/Betrayal Minimization of Self/Symptoms “I resent not being the person I was” “They (clinic staff) have answered my lame questions and lame fears” “I talk to the Lord…I say you told me you were going to heal me.” “It can be very difficult, and I feel bad for my husband” Fear of Physical and Economic Dependence “Its almost horrifying to think that I would end up living in my children’s cellar.”
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