Equity in Cancer Survivorship: What we think we … · Equity in Cancer Survivorship: What we think...
Transcript of Equity in Cancer Survivorship: What we think we … · Equity in Cancer Survivorship: What we think...
Equity in Cancer Survivorship: What we think we know and what
seems to be missing…
Kimlin Tam Ashing, PhDProfessor, Beckman Research Institute
Founding Director, CCARECenter of Community Alliance for Research & Education Department of Population Sciences
City of Hope Medical Center
Learning Objectives
• Increase knowledge of both general population and cancer survivor diversity
• Discuss some of the challenges in Survivorship Research and Practice considering Systemic, Provider, Investigator, Individual and Population level contexts
• Opportunities for attending to survivors’ needs --rooted in Diversity and Inclusion Value and Practice
U.S. Population by Race/Ethnicity
Projected
U.S. Growth
Population
U.S. Census Bureau
Our Society Is…
Increasingly diverse in country of origin, identity, ethnicity, language,
religion, political status
Highly diverse in job status, income level and education
Our Society Is…
Rapidly shifting to an older, and more Latino- and Asian-
American population, and urban.
Rapidly shifting to an older, and more Latino- and Asian-American population,
and urban
Our Society Is…
Our Society Is…
Not healthy due to poverty, health care inaccessibility, unhealthy eating, physical
activity
Our Society Is…
Suffering from environmental pollution: food, chemical, radiation, light,
sedentary lifestyles
Our Society Is…
Suffering from increasing cancer, diabetes, obesity and chronic diseases with barrier to accessible and quality
care
Rates are per 100,000 Cancer Incidence and Death Rates by Site, Race and Ethnicity, U.S., 2006-2010Source: American Cancer Society
Rates are per 100,000 Cancer Incidence and Death Rates by Site, Race and Ethnicity, U.S., 2006-2010Source: American Cancer Society
Hispanic Population by State
Size of Opportunity
U.S.
Estimated New Cancer Cases and Deaths Among Hispanics
Asian Population by State
Asians and Asian Americans in the US (millions) - 2010 Census
Bureau data
Estimated New Cancer Cases and Deaths Among Asian American, Native Hawaiian and Pacific Islander
African American Population by State
African American Population by State - 2010 Census Bureau
data
Estimated New Cancer Cases and Deaths Among African Americans
Native American Population by State
Source: Census 2000
Source: American Cancer Society Cancer Facts & Figures 2005-2015. Atlanta, GA
Cancer Cases
• Ethnic minorities and poor bear unequal premature mortality, morbidity• Ethnic minorities, poor, immigrant, refuge, elderly, sexual minority have
unequal cancer, overall disease burden• Socio-political, social, immigration, gender identity, sexual preference,
age status influence access to & quality care, health, survival and QOL• Knowledge, resources, quality care and service gaps pertinent to
specialty care are widening• infrastructure for data collection, mining, functionality and utilization
about marginalized populations are lacking• Research inclusion and participation are insufficient• Federal, State policies require ethnic minority and diversity inclusion• Ethnic minorities equal 20% of the cancer survivor population and
growing• Providers within underserved communities have limited access to
optimal health care resources, precision medicine and research
Cancer Health Disparities
Cancer Survivors in the US
Survivorship Intervention and Care
• Survivorship care is integrated, patient centered care promoting the best health possible:
– Nurturing Quality of Life– Reducing Distress, Pain and Suffering– Promoting Health and Wellbeing– Supporting Patient Satisfaction and Activation– Extending Life?
For All People Affected by Cancer
Survivorship Research
• In advancing the Science of Survivorship we conduct research that builds, designs, tests and evaluates studies that present representative population data and evidence of interventions, strategies and tools to provide survivorship care that promote the best health possible for our diverse cancer survivor population.
Addressing Survivorship
Systemic Level Challenges
Provider/Investigator Level Challenges
Patient/Population Level Challenges
Survivorship
Systemic Level Challenges
Systemic Level
Challenges
Resources Funding
Personnel
Infrastructure
Affordability
Technology
Acceptability
Accessibility
Metrics
Provider/ Investigator Level Challenges Level Challenges
Provider/
Investigator Level
Challenges
Training
Cultural Competence
Skill
Self
Metrics
CulturalHumility
Communication
Clinical
Competence
Patient/Population Level Considerations
General Health
Community
Individual Aspects of Personhood
Family
•Health Status•Co-Occurring Illnesses•Psychological Distress
Overweight-Obesity•Nutrition •Physical Activity
•Life Stress•Resilience/Hardiness•Spirituality
• Medical Efficacy• Health Choice and Behaviors SES
•Family strain•Stability•Coping
•Beliefs•Support•Functional burden
•Engagement• Characteristic•Resources
•Demography •Services •Training
Complexity of Comorbidity
Comorbidity Health Outcomes:Health Status
Short Term & Long Term Quality of LifeDistress
Treatment Outcomes Disability: Physical & Functional
Comobid burdenMortality
Kerr, E. A., et al. (2007). "Beyond comorbidity counts: how do comorbidity type and severity influence diabetes patients’ treatment priorities and self-management?" J Gen Intern Med 22(12): 1635-1640.
The increased complexity of comorbidity is associated with worse health outcomes, more complex clinical management, and increased health care costs.
Cancer Disparities
Of all the forms of inequality, injustice in health care is the most shocking and inhumane.
-Dr. Martin Luther King, Jr.
African Americans are more likely to
get and die from
cancer
Latinos are most at risk for toxic
environ-mental
exposures.
Asian Americans
are the least likely
to get cancer
screening
Native Americans are most
likely to be left out in research
and policy
Cancer Survivorship Disparities
Population-specific differences in the presence of disease, health outcomes, quality of health care, and access to health care services
African Americans:
DelayedDiagnosis
Treatment, Poor
SurveillancePhysical
Outcomes
LatinoAmericans: access to
care,DelayedDiagnosisFunctionEmotional
Burden
Asian Americans:
FearUncertainty
FatigueCultural
and LinguisticConcerns
Native Americans:
Lack services,Delayed Diagnosis
Treatment Functional
Strain
Suvivorship Interventions Inequity• Psychosocial interventions among non-
Hispanic white cancer survivors
– More than 400 trials
– A variety of health benefits
• Reduced risks of recurrence and mortality (Stagl, 2015, Andersen et al., 2008, Spiegel et al., 1989)
• Cancer related morbidity (Stanton 2015)
• Depressive symptoms (McCorkie 2014)
• Improved quality of life (Ganz 2015, Glanz, Janz)
• Improved physical functioning (Alfano 2012, Stein 2016)
• Fewer interventions among minorities
Provocative Questions Voices of Advocates “Why Do We Have”….
1) More and different cancers and at younger ages
2) More advanced, aggressive, metastatic cancers
3) More co-occurring illness and second cancers
4) Greater daily living risks factors: the Socioecological Pre- and Co-morbid Contexts
5) Suboptimal care: preventive, diagnostic, therapeutic care; poor communication, satisfaction, quality; discrimination; marginalization, surveillance and follow-up primary, oncology and specialty care
6) Poor survival: the persistent 15% lag
7) Persistent survivorship outcomes
8) We will join the scientists, please listen and respond to our voices
Our Nation is Diverse
DISCOVERY DEVELOPMENT
DISSEMINATION
Integrating
Context
Fostering a Norm of Inclusion
Harnessing Communication
Technology
Ensuring Equitable Diffusion of Innovations
Prioritizing Specialized Training
Demographic Shifts
Cultural & Linguistic Diversity
Group Heterogeneity
HEALTH INEQUITIES
Health Status
MorbidityMortality
Quality of Life
DELIVERY
HEALTH EQUITY
ConNECT Framework for Health Equity Science and Practice
Alcaraz, Sly, Ashing et al.,
2016
Community Inclusion: Symbiotic Partnership
Ashing, 2013
Cultural & Socio-Ecological Contextual Framework for Precision Medicine in Population Health
Fitting into the Moon Shot: Cancer Research, Policy, Practice Continuum
Survivorship
Oncology Providers
Non-Oncology Providers
Primary Care
Providers
Researchers
DPH, Public servants
Policy Makers
Community Hospitals &
Clinics
National Cancer Orgs
Community Based Orgs
Academic Institutions
Schools, Employers
Patients, Survivors, Caregivers
Media & Technology
Multisectoral Engagement for SurvivorshipTraining, Research and Practice
Ashing, 2014
Research Participation
Source: - Baseline Study of Patient Accrual Onto Publicly Sponsored Trials,” Coalition of Cancer Cooperative Groups for the Global Access Project, National Patient Advocate Foundation, April 2006
- Cancer Facts – Cancer Clinical Trials: Participation by Underrepresented Population. Intercultural Cancer Council. Retrieved online on March 30, 2011. Website: http://iccnetwork.org/cancerfacts/ICC-CFS11.pdf
40% Ethnic Minority Enrollment
40 BY 20: Ethnic Minority
Clinical Trial Participation
Native American/Alaska Native, 2.0%
Asian/Pacific Islander, 8.0%
Black/African American, 14.0%
Hispanic/Latino,
15.0%
Multiple, 1.0%
White, 60%
References
Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2007, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2007/, based on November 2009 SEER data submission, posted to the SEER web site, 2010.
Frances Lee-Lin, Thuan Nguyen, Nisreen Pedhiwala, Nathan Dieckmann, and Usha Menon (2015) A Breast Health Educational Program for Chinese-American Women: 3- to 12-Month Postintervention Effect. American Journal of Health Promotion: January/February 2015, Vol. 29, No. 3, pp. 173-181.
Gwede CK, William CM, Thomas KB, Tarver WL, Quinn GP, Vadaparampil ST, Kim Jongphil , Lee JH, Meade CD. (2010). Exploring Disparities and Variability in Perceptions and Self-Reported Colorectal Cancer Screening Among Three Ethnic Subgroups of U.S. Blacks. Oncology Nursing Forum, 37(5): 581-591.
Janz NK, Mujahid MS, Hawley ST, Griggs JJ, Alderman A, Hamilton AS, Graff J, Katz SJ. (2009). Racial/ethnic differences in quality of l ife afterdiagnosis of breast cancer. Journal of Cancer Survivorship. 3:212-222.
Kreuter MW, Holmes K, Alcaraz K, Kalesan B, Rath S, Richert M, McQueen A, Caito N, Robinson L, Clark EM. (2010). Comparing narrative and informational videos to increase mammography in low-income African American women. Patient Education and Counseling 81S S6-S14.
Lechner SC, Ennis-Whitehead N, Robertson BR, Annane DW, Vargas S, Carver CS, Antoni MH. (2013). Adaptation of Psycho-Oncology Intervention for Black Breast Cancer Survivors: Project CARE. The Counseling Psychologist. 41(2) 286 -312.
Rush CL, Darling M, Ell iott MG, Febus-Sampayo I, Kuo C, Munoz J, Duron Y, Torres M, Galvan CC, Gonzalez F, Caicedo L, Napoles A, Jensen RE, Anderson E, Graves KD. (2015) Engaging Latina cancer survivors, their caregivers, and community partners in a randomized controlled trial: Nueva Vida intervention. Qual Life Res 24:1107-1118.
Sheppard, V. B., Figueiredo, M., Cañar, J., Goodman, M., Caicedo, L., Kaufman, A., Norling, G. and Mandelblatt, J. (2008), Latina a LatinaSM: developing a breast cancer decision support intervention. Psycho-Oncology, 17: 383–391. doi: 10.1002/pon.1239
Sly JR, Edwards T, Shelton RC, Jandorf L. (2012). Identifying Barriers to Colonoscopy Screening for Nonadherent African American Participants in a Patient Navigation Intervention. Health Education and Behavior. Society for Public Health Education.
Thompson HS, Valdimarsdottir HB, Duteau-Buck C, Guevarra J, Bovbjerg DH, Richmond-Avellaneda C, Amarel D, Godfrey D, Brown K, Offit K. (2002). Psychosocial Predictors of BRCA Counseling and Testing Decisions among Urban African-American Women. Cancer Epidemiology, Biomarkers and Prevention. Vol 11, 1579-1585.
References
Dieli-Conwright, C. M., et al. "Effects of a 16-week Resistance and Aerobic Exercise Intervention on Metabolic Syndrome in Overweight/ObeseLatina Breast Cancer Survivors." Cancer Epidemiology Biomarkers & Prevention24.4 (2015): 763-763.
Courneya, Kerry S., et al. "Effects of a structured exercise program on physical activity and fitness in colon cancer survivors: One year feasibility results from the CHALLENGE Trial." Cancer Epidemiology Biomarkers & Prevention 25.6 (2016): 969-977.
Demark-Wahnefried, Wendy, et al. "Quality of l ife outcomes from the Exercise and Nutrition Enhance Recovery and Good Health for You (ENERGY) -randomized weight loss trial among breast cancer survivors."Breast cancer research and treatment 154.2 (2015): 329-337.
Sanchis-Gomar, Fabian, et al. "Physical inactivity and low fitness deserve more attention to alter cancer risk and prognosis." Cancer Prevention Research 8.2 (2015): 105-110.
Lu, Yani, et al. "History of Recreational Physical Activity and Survival After Breast Cancer The California Breast Cancer Survivorshi p Consortium."American journal of epidemiology 181.12 (2015): 944-955.
World Health Organization (2015). World Health Statistics 2015. Geneva, Switzerland: World Health Organization.
Capozzi, Lauren C., et al. "Patient‐reported outcomes, body composition, and nutrition status in patients with head and neck cancer: Results from an exploratory randomized controlled exercise trial." Cancer (2016).
Kassianos, Angelos P., et al. "Quality of l ife and dietary changes among cancer patients: A systematic review." Quality of Life Research 24.3 (2015): 705-719.
Sierpina, Victor, et al. "Nutrition, metabolism, and integrative approaches in cancer survivors." Seminars in oncology nursing. Vol. 31. No. 1. WB Saunders, 2015.
Chajes, Veronique, and Isabelle Romieu. "Nutrition and breast cancer."Maturitas 77.1 (2014): 7-11.
Ashing-Giwa K, et al. Peer Based Models of Supportive Care: The Impact of Peer Support Groups in African American Breast cancer Survivors. Oncology Nursing Forum. 2012, 39 (6), 585-591
Ashing-Giwa K. Recruitment and Retention of African- and Latina American Breast Cancer Survivors into Behavioral Clinical Trials. Oncology Nursing Forum. 2012, 39(5), E434-442.
Ashing-Giwa K, Lam C, Xie B. Assessing Health-Related Quality of Life of Chinese-American Breast Cancer Survivors: A Measurement Validation Study. Psycho-oncology. 2013 Mar;22(3):704-7.
Ashing-Giwa K, Rosales M, Lai L, Weitzel JN. (2013). Depressive Symptomatology among Latina Breast Cancer Survivors . Psycho-Oncology, 22(4): 845-53
Ashing-Giwa K, and M. Rosales. "A cross-cultural validation of patient-reported outcomes measures: a study of breast cancers survivors." Quality of Life Research (2013): Mar;22(2):295-308
Ashing-Giwa K, Rosales, M. “Examining Patient Reported Evaluation of Therapeutic Care Delay Among Latina- and European-American Cervical Cancer Survivors.” Gynecologic Oncology 2013 Feb;128(2):160-5.
Ashing-Giwa K, Tapp C, Brown S, Smith J, Fulcher G, Mitchell E, Santifer R.H, McDowell K, Martin V, Betts-Turner B, Carter D, Adkins-Jackson P, & Rosales,M. "Are Survivorship Care Plans Responsive to African American Breast Cancer Survivors?: Voices of Survivors and Advocates J Cancer Survivorship. 2013(7):283-291
Ashing, Kimlin, and Monica Rosales. "A telephonic‐based trial to reduce depressive symptoms among Latina breast cancer survivors." Psycho‐Oncology 23.5 (2014): 507-515.
Ashing, K., Rosales, M., Lai, L., & Hurria, A. (2014). Occurrence of comorbidities among African-American and Latina breast cancer survivors. Journal of Cancer Survivorship, 2014, 8(2), 312-318.
Ashing, Kimlin, Monica Rosales, and Alejandro Fernandez. "Exploring the influence of demographic and medical characteristics of African-American and Latinas on enrollment in a behavioral intervention study for breast cancer survivors." Quality of Life Research (2014): 1-10.
Ashing K, et al., Nurturing Advocacy Inclusion to Bring Health Equity in Breast Cancer among African Descended Women. In Press Breast Cancer Management, Futures Medicine (2014) 3(6), 487-495.
References
Thank You