Download Living Well with Cancer - Caribbean Medical Providers Practicing

3rd Annual Medical Conference
& Community Outreach Program
June 10, 11 & 12, 2016
Grenada, W.I.
www.cmppa.org
Well-being and Cancer Survivorship:
Patient Centered Treatment Summaries and
Survivorship Care Plans
Kimlin Tam Ashing, PhD
Professor & Director
Center of Community Alliance for Research and Education (CCARE)
City of Hope
Diversity in Persons Affected by Cancer
19
Disparities in Breast Cancer Mortality20
Five-year estimates of breast cancer mortality rates, Los Angeles (1999-2009)
Ethnic Minority Disparities in Cancer
• Younger age at diagnosis for African American1
• Later stage at diagnosis for African American and Latinas1
• African American and Latinas have more and advanced cooccurring chronic illnesses3,4
• Less likely to be treated at major cancer center
• Less likely to participate in research including clinical trials
• Latinas and African American report lower quality of care and
lower satisfaction with care5,6,7
1
American Cancer Society. Breast Cancer Facts & Figures 2013-2014. Atlanta: American Cancer Society, Inc. Retrieved from
http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-040951.pdf. 2013.
2 Weitzel et al. “Prevalence and Type of BRCA Mutations in Hispanics Undergoing Genetic Cancer Risk Assessment in the Southwestern United States: A Report From the Clinical Cancer
Genetics Community Research Network.” J Clinical Onco 2013; 31(2):210-216.
3 Silber et al. “Characteristics Associated with Differences in Survival Among Black and White Women with Breast Cancer.” JAMA. 2013; 310(4):389-397
4 Ashing, Kimlin, et al. "Occurrence of comorbidities among African-American and Latina breast cancer survivors." J of Cancer Surviv 8.2 (2014):312-318.
5 Rosales et al. “Quality of cancer follow-up care: A focus on Latina breast cancer survivors.” J Cancer Surviv (2014) 8:364-371
6 Campesino M et al. Perceived discrimination and ethnic identity among breast cancer survivors. Oncol Nurs Forum. 2012;39(2):E91–E100.
7 Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press, 2003.
8 Wildes et al. “The Satisfaction of Latina Breast Cancer Survivors with their Healthcare and Health-Related Quality of Life.” J of Women’s Health. July 2011 ; 20(7):1065-1074.
9 Thind et al. “Satisfaction with care among low-income women with breast cancer.” J Women’s Health. Jan 2010; 19(1):77-86.
Need for Long term Follow-up and Chronic Disease Management
• Cancer as a chronic disease
• Greater understanding of the consequences of cancer and its
treatment, special attention on younger survivors
– Anthracycline related heart failure in women went unrecognized
– Hodgkin's patients at increased risk of breast cancer and heart
disease- missed
• Follow-up care setting can be a platform for research
• Focus on survivorship education and training
• Designing and applying interventions to eliminate/reduce
sequelae
• Educating and supporting survivors for optimal self care
IOM Report and Commission on Cancer
Survivorship Care Plan Recommendation
•To Provide Appropriate Care for Cancer Survivors and their Potential Late Effects of
Treatment as a Chronic Conditions
•Medical Vulnerabilities and Late Effects include:
•Premature all-cause and cancer-related deaths
•Recurrence and second cancer
•Endocrine - menopause, reproductive and sexual health issues
•Skeletal-muscular - heart, bone, dental
•Lymphatic - lymphedema
•Psychological - anxiety, fear, psychosocial strain
From cancer patient to cancer survivor: Lost in transition/Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board ; Maria
Hewitt, Sheldon Greenfield, and Ellen Stovall, editors.
American College of Surgeons Commission on Cancer. (2011). Cancer program standards 2012: Ensuring patient-centered care. Retrieved on April 11, 2012 from
http://www.facs.org/cancer/coc/programstandards2012.html
Khatcheressian JL, Hurley P, Bantug E, et al. Breast Cancer Follow-Up and Management After Primary Treatment: American Society of Clinical Oncology Clinical Practice
Guideline Update. Journal of Clinical Oncology. March 1, 2013 2013;31(7):961-965.
Kim H, Han W, Yi O, et al. Young age is associated with ipsilateral breast tumor recurrence after breast conserving surgery and radiation therapy in patients with HER2positive/ER-negative subtype. Breast Cancer Research and Treatment. 2011;130(2):499-505
Rosenberg SM, Partridge AH. Premature menopause in young breast cancer: effects on quality of life and treatment interventions. Journal of thoracic disease. 2013;5(Suppl
1):S55.
Schmitz KH, Prosnitz RG, Schwartz AL, Carver JR. Prospective surveillance and management of cardiac toxicity and health in breast cancer survivors. Cancer.
2012;118(S8):2270-2276.
Winters-Stone KM, Schwartz AL, Hayes SC, Fabian CJ, Campbell KL. A prospective model of care for breast cancer rehabilitation: Bone health and arthralgias. Cancer.
2012;118(S8):2288-2299.
Campbell KL, Pusic AL, Zucker DS, et al. A prospective model of care for breast cancer rehabilitation: Function. Cancer. 2012;118(S8): 2300-2311.
Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011;117(S10):2289-2294
ASCO Survivorship Guidelines Development
Objective: To develop evidence-based clinical practice guidelines,
screening instruments, and assessment tools to help healthcare
provider identify common cancer-related effects and care for survivors
of adult-onset cancers
Scope: This guidance will be symptom-based, beginning with
identification of potential late and long-term effects and best
screening practices for early detection and assessment of these
complications
ASCO Survivorship Guidelines Development
Three recent Journal of Clinical Oncology articles highlighting
survivorship guidelines:
IOM Report and Commission on Cancer
Survivorship Care Plan Recommendation
• When treatment ends, patient should receive:
• Treatment Summary record
• Surveillance, Follow-up care plan, List of Providers
• Health Advisories
• Quality of Life information
• Community Resources
IOM Report (2006) From cancer patient to cancer survivor: Lost in transition/Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy
Board ; Maria Hewitt, Sheldon Greenfield, and Ellen Stovall, editors.
American College of Surgeons Commission on Cancer. (2011). Cancer program standards 2012: Ensuring patient-centered care. Retrieved on April 11, 2012 from
http://www.facs.org/cancer/coc/programstandards2012.html
Users of TSSCP
 Post-treatment survivors of all cancer types
 Developers and implementers of survivorship programs
 Health care providers: doctors, nurses, social workers,
psychologists.
 Providers who are not within the oncology setting
 Family members, care givers
 Researchers
 Advocates
Intent: How do we anticipate the TSSCP will make a difference
for survivors?
•Increase survivors’ knowledge of what care to expect & follow
•Increased knowledge for providers about what services to deliver to
survivors and in what order
•Empower survivors with knowledge of TX, risk, follow-up care
•Improve patient-provider communication
•Improve provider-provider communication
•Improve survivors’ quality of life
•Improve survivors’ access to resources
•Improve years of life?
New Evidence on TSSCP
•
Survivors want content that is flexible and tailored that focuses on health promotion, psychosocial
support, and other resources. They find it useful if they receive both paper and electronic SCPs.
•
Increases patient self-efficacy in interacting with physicians, Improves communication with and
between providers.
•
Improves knowledge about cancer, treatment, and follow-up care and is linked to changes in survivors’
health behaviors particularly among low-income BCSs.
•
Enhances peace of mind and confidence due to providing a plan to manage follow-up care.
•
Written provider instructions about follow-up care is associated with the use of cancer screening.
•
Increase in perceived coordination of care after receiving a survivorship care plan.
•
Improves BCS adherence to recommended BC survivorship care
Mayer, D. K., Birken, S. A., Check, D. K. and Chen, R. C. (2015), Summing it up: An integrative review of studies of cancer survivorship care plans (20062013). Cancer, 121: 978–996. doi: 10.1002/cncr.28884
Salz, T. and Baxi, S. (2016), Moving survivorship care plans forward: focus on care coordination. CANCER MEDICINE. doi: 10.1002/cam4.733
Maly, Rose C., et al. "A randomized controlled trial of survivorship care plans among low-income breast cancer survivors." ASCO Annual Meeting
Proceedings. Vol. 34. No. 3_suppl. 2016.
COH Survivorship Guidelines
The guidelines were structured to include:
• An emphasis on shared-care, patient-centered care
• Culturally and Linguistically responsive Preamble to increase
knowledge and usability
• Health history (e.g., chronic conditions, medications)
• An integrative care and co-disease management approach
•Health Advisories (vaccines, exercise, nutrition)
•Symptom management and self care
•HRQOL (identifying sources of distress, spirituality)
•Resources (Community, National, Ethnic and Linguistic responsive)
COH Survivorship Guidelines
How do we anticipate that the guidelines will make a difference for
survivors?
Educate and activate patients into their medical care and self care, as
well as help navigate through the cancer survivorship experience.
Patients will be informed regarding their treatment and potential side
effects, surveillance, referrals for follow-up care, other chronic illness,
symptom management, self care, health advisories, quality of life and
resources.
YBCS TSSCP
English/AA
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Eng/Span
TSSCP
Lifestyle Changes for BCS by Ethnicity
70
European
African
60
Latina
Asian
50
%
40
30
20
10
0
Healthy
Eating
Increased
Exercise
CAM
Stress
Reduction
Eating: X2=0.71; p>0.05; Exercise: X2=22.40; p<0.001; CAM: X2=5.13; p<0.05; Stress: X2=15.20;
p<0.01
Ashing‐Giwa KT, Lim JW, Gonzalez P. Exploring the relationship between
physical well‐being and healthy lifestyle changes among European‐and
Latina‐American breast and cervical cancer survivors. Psycho‐Oncology.
2010;19(11): 1161-70.
Moving Forward: TSSCP Research and Practice
• Information on prevalence of long-term and late effects or phase of posttreatment window of vulnerability
• Evidence is slowly emerging with limited data primarily from observational
studies
• Research and evidence considering medically vulnerable populations,
diversity and equity including ethnicity, age, gender, socioeconomics,
language, etc.
• Access and cost, survivors may lack health care coverage of some posttreatment services
• Integration of specialty care (e.g. nutritional or genetic counseling) in
certain geographic areas
• Integration of primary care
• Standards for training, implementation and evaluation
Preliminary Outcomes for TSSCP Implementation Intervention
• Patient activation results in access the TSSCP
• TSSCP seem to improve knowledge of treatment summary,
surveillance and follow-up tests needed
• Increase in knowledge about coping
• Increase in awareness of available resources
• Enhanced communication with oncology providers
• Enhanced communication with primary and other providers
• Better adherence to follow-up care
Team
CCARE:
Mayra Serrano, MPH, CHES
Alejandro Fernandez, CRA II
Marisela Huerta, Community Interventionist
Katty Nerio, CRA I
Collaborators:
Dr Lily Lai, M.D. Oncology Surgeon
Thank You!
References
2. U.S. Cancer Statistics Working Group. United States Cancer Statistics: 2003–2007 Incidence and Mortality Web-based Report. Atlanta:
U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2010.
Available at: www.cdc.gov/uscs
3. 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
6. http://www.livestrongcareplan.org/
7. From cancer patient to cancer survivor : Lost in transition / Committee on Cancer Survivorship: Improving Care and Quality of Life,
National Cancer Policy Board ; Maria Hewitt, Sheldon Greenfield, and Ellen Stovall, editors.
8. Ganz, P.A., & Hahn, E.E. (2008). Implementing a survivorship care plan for patients with breast cancer. Journal of Clinical Oncology,
26(5), 759-767.
9. APOS Society: http://www.apos-society.org/
10. Ashing-Giwa K. The Contextual Model of HRQoL: A Paradigm for Expanding the HRQoL Framework. Quality of Life Research 2005;
14:297–307
11. 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, AdkinsJackson 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
12. Ashing, K, et al. Developing a Treatment Summary and Survivorship Care Plan Responsive to Spanish Language Preferred Latina Breast
Cancer Survivors. Journal of Cancer Survivorship (2014): 1-15
13. Ashing K, et al. "Developing a Treatment Summary and Survivorship Care Plan Responsive to African-American Breast Cancer
Survivors." In Press.
References
14. Khatcheressian JL, Hurley P, Bantug E, et al. Breast Cancer Follow-Up and Management After Primary Treatment: American
Society of Clinical Oncology Clinical Practice Guideline Update. Journal of Clinical Oncology. March 1, 2013 2013;31(7):961965.
15. Kim H, Han W, Yi O, et al. Young age is associated with ipsilateral breast tumor recurrence after breast conserving surgery and
radiation therapy in patients with HER2-positive/ER-negative subtype. Breast Cancer Research and Treatment.
2011;130(2):499-505
16. Rosenberg SM, Partridge AH. Premature menopause in young breast cancer: effects on quality of life and treatment
interventions. Journal of thoracic disease. 2013;5(Suppl 1):S55.
17. Schmitz KH, Prosnitz RG, Schwartz AL, Carver JR. Prospective surveillance and management of cardiac toxicity and health in
breast cancer survivors. Cancer. 2012;118(S8):2270-2276.
18. Winters-Stone KM, Schwartz AL, Hayes SC, Fabian CJ, Campbell KL. A prospective model of care for breast cancer
rehabilitation: Bone health and arthralgias. Cancer. 2012;118(S8):2288-2299.
19. Campbell KL, Pusic AL, Zucker DS, et al. A prospective model of care for breast cancer rehabilitation: Function. Cancer.
2012;118(S8):2300-2311.
20. Zebrack BJ. Psychological, social, and behavioral issues for young adults with cancer. Cancer. 2011;117(S10):2289-2294