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01-10-2019 | Care | Original Paper

A Community-Partnered, Evidence-Based Approach to Improving Cancer Care Delivery for Low-Income and Minority Patients with Cancer

Authors: Manali Patel, Nevedal Andrea, Bhattacharya Jay, Tumaini R. Coker

Published in: Journal of Community Health | Issue 5/2019

Abstract

Community-engaged adaptations of evidence-based interventions are needed to improve cancer care delivery for low-income and minority populations with cancer. The objective of this study was to adapt an intervention to improve end-of-life cancer care delivery using a community–partnered approach. We used a two-step formative research process to adapt the evidence-based lay health workers educate engage and encourage patients to share (LEAPS) cancer care intervention. The first step involved obtaining a series of adaptations through focus groups with 15 patients, 12 caregivers, and 6 leaders and staff of the Unite Here Health (UHH) payer organization, and 12 primary care and oncology care providers. Focus group discussions were recorded, transcribed, and analyzed using the constant comparative method of qualitative analysis. The second step involved finalization of adaptations from a community advisory board comprised of 4 patients, 2 caregivers, 4 oncology providers, 2 lay health workers and 4 UHH healthcare payer staff and executive leaders. Using this community-engaged approach, stakeholders identified critical barriers and solutions to intervention delivery which included: (1) expanding the intervention to ensure patient recruitment; (2) including caregivers; (3) regular communication between UHH staff, primary care and oncology providers; and (4) selecting outcomes that reflect patient-reported quality of life. This systematic and community-partnered approach to adapt an end-of-life cancer care intervention strengthened this existing intervention to promote the needs and preferences of patients, caregivers, providers, and healthcare payer leaders. This approach can be used to address cancer care delivery for low-income and minority patients with cancer.

Siegel, R. L., Miller, K. D., & Jemal, A. (2018). Cancer statistics, 2018. CA: A Cancer Journal of Clinicians, 68(1), 7–30. https://doi.org/10.3322/caac.21442.CrossRef

Ward, E., Jemal, A., Cokkinides, V., Singh, G. K., Cardinez, C., Ghafoor, A., et al. (2004). Cancer disparities by race/ethnicity and socioeconomic status. CA: A Cancer Journal of Clinicians, 54(2), 78–93.

Patel, M. I., Ma, Y., Mitchell, B., & Rhoads, K. F. (2015). How do differences in treatment impact racial and ethnic disparities in acute myeloid leukemia? Cancer Epidemiology, Biomarkers & Prevention, 24(2), 344–349. https://doi.org/10.1158/1055-9965.EPI-14-0963.CrossRef

O’Keefe, E. B., Meltzer, J. P., & Bethea, T. N. (2015). Health disparities and cancer: Racial disparities in cancer mortality in the United States, 2000–2010. Frontiers in Public Health, 3, 51. https://doi.org/10.3389/fpubh.2015.00051.CrossRefPubMedPubMedCentral

Freeman, H. P., & Chu, K. C. (2005). Determinants of cancer disparities: Barriers to cancer screening, diagnosis, and treatment. Surgical Oncology Clinics of North America, 14(4), 655–669. https://doi.org/10.1016/j.soc.2005.06.002. v.CrossRefPubMed

National Center for Health Statistics. (2011). Health, United States, 2010: With special feature on death and dying. Hyattsville, MD: National Center for Health Statistics.

Hanchate, A., Kronman, A. C., Young-Xu, Y., Ash, A. S., & Emanuel, E. (2009). Racialand ethnic differences in end-of-life costs: Why do minorities cost more than whites? Archives of International Medicine, 169(5), 493–501. https://doi.org/10.1001/archinternmed.2008.616.CrossRef

Degenholtz, H. B., Thomas, S. B., & Miller, M. J. (2003). Race and the intensive care unit: Disparities and preferences for end-of-life care. Critical Care Medicine, 31(5 Suppl), 373–378. https://doi.org/10.1097/01.CCM.0000065121.62144.0D.CrossRef

Cintron, A., & Morrison, R. S. (2006). Pain and ethnicity in the United States: A systematic review. Journal of Palliative Medicine, 9(6), 1454–1473. https://doi.org/10.1089/jpm.2006.9.1454.CrossRefPubMed

10.

Check, D. K., Samuel, C. A., Rosenstein, D. L., & Dusetzina, S. B. (2016). Investigation of racial disparities in early supportive medication use and end-of-life care among medicare beneficiaries with stage IV breast cancer. Journal of Clinical Oncology, 34(19), 2265–2270. https://doi.org/10.1200/JCO.2015.64.8162.CrossRefPubMedPubMedCentral

11.

Welch, L. C., Teno, J. M., & Mor, V. (2005). End-of-life care in black and white: Race matters for medical care of dying patients and their families. Journal of the American Geriatrics Society, 53(7), 1145–1153. https://doi.org/10.1111/j.1532-5415.2005.53357.x.CrossRefPubMed

12.

Smith, A. K., Davis, R. B., & Krakauer, E. L. (2007). Differences in the quality of the patient-physician relationship among terminally ill African-American and white patients: Impact on advance care planning and treatment preferences. Journal of General Internal Medicine, 22(11), 1579–1582. https://doi.org/10.1007/s11606-007-0370-6.CrossRefPubMedPubMedCentral

13.

Periyakoil, V. S., Neri, E., & Kraemer, H. (2015). No easy talk: A mixed methods study of doctor reported barriers to conducting effective end-of-life conversations with diverse patients. PLoS ONE, 10(4), e0122321. https://doi.org/10.1371/journal.pone.0122321.CrossRefPubMedPubMedCentral

14.

Mack, J. W., Paulk, M. E., Viswanath, K., & Prigerson, H. G. (2010). Racial disparities in the outcomes of communication on medical care received near death. Archives of International Medicine, 170(17), 1533–1540. https://doi.org/10.1001/archinternmed.2010.322.CrossRef

15.

Kwak, J., & Haley, W. E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist, 45(5), 634–641.CrossRef

16.

Loggers, E. T., Maciejewski, P. K., Paulk, E., DeSanto-Madeya, S., Nilsson, M., Viswanath, K., et al. (2009). Racial differences in predictors of intensive end-of-life care in patients with advanced cancer. Journal of Clinical Oncology, 27(33), 5559–5564. https://doi.org/10.1200/JCO.2009.22.4733.CrossRefPubMedPubMedCentral

17.

Connor, S. R., Elwert, F., Spence, C., & Christakis, N. A. (2008). Racial disparity in hospice use in the United States in 2002. Palliative Medicine, 22(3), 205–213. https://doi.org/10.1177/0269216308089305.CrossRefPubMed

18.

Greiner, K. A., Perera, S., & Ahluwalia, J. S. (2003). Hospice usage by minorities in the last year of life: Results from the National Mortality Followback Survey. Journal of the American Geriatrics Society, 51(7), 970–978.CrossRef

19.

Wright, A. A., Zhang, B., Ray, A., Mack, J. W., Trice, E., Balboni, T., et al. (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA, 300(14), 1665–1673. https://doi.org/10.1001/jama.300.14.1665.CrossRefPubMedPubMedCentral

20.

Teno, J. M., Gruneir, A., Schwartz, Z., Nanda, A., & Wetle, T. (2007). Association between advance directives and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 55(2), 189–194. https://doi.org/10.1111/j.1532-5415.2007.01045.x.CrossRefPubMed

21.

Bylander, J. (2018). Communication about health care with low-income Californians: Results from a New Survey. https://www.healthaffairs.org/do/10.1377/hblog20131101.035206/full/. Accessed 2 June 2018.

22.

Mechanic, D., & Schlesinger, M. (1996). The impact of managed care on patients’ trust in medical care and their physicians. JAMA, 275(21), 1693–1697.CrossRef

23.

Patel, M. I., Periyakoil, V. S., Blayney, D. W., Moore, D., Nevedal, A., Asch, S., et al. (2017). Redesigning cancer care delivery: Views from patients and caregivers. Journal of Oncology Practice, 13(4), e291–e302. https://doi.org/10.1200/JOP.2016.017327.CrossRefPubMedPubMedCentral

24.

Patel, M. I., Periyakoil, V. S., Moore, D., Nevedal, A., & Coker, T. R. (2018). Delivering end-of-life cancer care: Perspectives of providers. American Journal of Hospice and Palliative Medicine, 35(3), 497–504. https://doi.org/10.1177/1049909117719879.CrossRefPubMed

25.

Lamont, E. B., & Christakis, N. A. (2001). Prognostic disclosure to patients with cancer near the end of life. Annals of Internal Medicine, 134(12), 1096–1105.CrossRef

26.

Meade, C. D., Wells, K. J., Arevalo, M., Calcano, E. R., Rivera, M., Sarmiento, Y., et al. (2014). Lay navigator model for impacting cancer health disparities. Journal of Cancer Education, 29(3), 449–457. https://doi.org/10.1007/s13187-014-0640-z.CrossRefPubMedPubMedCentral

27.

Rocque, G. B., Taylor, R. A., Acemgil, A., Li, X., Pisu, M., Kenzik, K., et al. (2016). Guiding lay navigation in geriatric patients with cancer using a distress assessment tool. Journal of the National Comprehensive Cancer Network, 14(4), 407–414.CrossRef

28.

Shelton, R. C., Thompson, H. S., Jandorf, L., Varela, A., Oliveri, B., Villagra, C., et al. (2011). Training experiences of lay and professional patient navigators for colorectal cancer screening. Journal of Cancer Education, 26(2), 277–284. https://doi.org/10.1007/s13187-010-0185-8.CrossRefPubMedPubMedCentral

29.

Liu, G., & Perkins, A. (2015). Using a lay cancer screening navigator to increase colorectal cancer screening rates. Journal of American Board of Family Medicine, 28(2), 280–282. https://doi.org/10.3122/jabfm.2015.02.140209.CrossRef

30.

Patel, M. I., Sundaram, V., Desai, M., Periyakoil, V. S., Kahn, J. S., Bhattacharya, J., et al. (2018). Effect of a lay health worker intervention on goals-of-care documentation and on health care use, costs, and satisfaction among patients with cancer: a randomized clinical trial. JAMA Oncology, 4(10), 1359–1366. https://doi.org/10.1001/jamaoncol.2018.2446.CrossRefPubMedPubMedCentral

31.

Fischer, S. M., Kline, D. M., Min, S. J., Okuyama-Sasaki, S., & Fink, R. M. (2018). Effect of Apoyo con Carino (Support With Caring) Trial of a Patient Navigator Intervention to Improve Palliative Care Outcomes for Latino Adults With Advanced Cancer: A Randomized Clinical Trial. JAMA Oncology. https://doi.org/10.1001/jamaoncol.2018.4014.CrossRefPubMedPubMedCentral

32.

Marsiglia, F. F., & Booth, J. M. (2015). Cultural adaptation of interventions in real practice settings. Research on Social Work Practice, 25(4), 423–432. https://doi.org/10.1177/1049731514535989.CrossRefPubMed

33.

Merzel, C., & D’Afflitti, J. (2003). Reconsidering community-based health promotion: Promise, performance, and potential. American Journal of Public Health, 93(4), 557–574.CrossRef

34.

Glasgow, R. E., & Estabrooks, P. E. (2018). Pragmatic applications of RE-AIM for health care initiatives in community and clinical settings. Preventing Chronic Diseases, 15, E02. https://doi.org/10.5888/pcd15.170271.CrossRef

35.

Cohen, J. (1960). A coefficient of agreement for nominal scales. Educational and Psychological Measurement, 20, 37–46.CrossRef

36.

Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33(1), 159–174.CrossRef

37.

Glaser, B. G., & Strauss, A. L. (1967). Strategies for qualitative research, the discovery of grounded theory. Chicago: Aldine Publishing Company.

38.

Patel, M. I., Moore, D., & Milstein, A. (2015). Redesigning advanced cancer care delivery: Three ways to create higher value cancer care. Journal of Oncology Practice, 11(4), 280–284. https://doi.org/10.1200/JOP.2014.001065.CrossRefPubMed

39.

Centers for Medicare and Medicaid Services. (2018). The Oncology Care Model. https://innovation.cms.gov/initiatives/oncology-care/. Accessed 15 December 2018.

40.

Institute of Medicine (US) Roundtable on Health Disparities. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington (DC): National Academies Press (US); 2008. Appendix D, Community Approaches to Addressing Health Disparities. https://www.ncbi.nlm.nih.gov/books/NBK215366/.

41.

Miranda, J., Nakamura, R., & Bernal, G. (2003). Including ethnic minorities in mental health intervention research: A practical approach to a long-standing problem. Culture, Medicine and Psychiatry, 27(4), 467–486.CrossRef

42.

Janevic, M. R., Stoll, S. C., Lara, M., Ramos-Valencia, G., Bryant-Stephens, T., Persky, V., et al. (2016). The “Retrofitting” approach to adapting evidence-based interventions: A case study of pediatric asthma care coordination, United States, 2010–2014. Preventing Chronic Disease, 13, E114. https://doi.org/10.5888/pcd13.160129.CrossRefPubMedPubMedCentral

43.

Glasgow, R. E., Vogt, T. M., & Boles, S. M. (1999). Evaluating the public health impact of health promotion interventions: The RE-AIM framework. American Journal of Public Health, 89(9), 1322–1327.CrossRef

44.

Simply Put. (2018). https://www.cdc.gov/healthliteracy/pdf/Simply_Put.pdf. Accessed 15 December 2018.

45.

Highfield, L., Hartman, M. A., Mullen, P. D., Rodriguez, S. A., Fernandez, M. E., & Bartholomew, L. K. (2015). Intervention mapping to adapt evidence-based interventions for use in practice: Increasing mammography among African American women. BioMed Research International, 2015, 160103. https://doi.org/10.1155/2015/160103.CrossRef

46.

Escoffery, C., Lebow-Skelley, E., Haardoerfer, R., Boing, E., Udelson, H., Wood, R., et al. (2018). A systematic review of adaptations of evidence-based public health interventions globally. Implementation Science, 13(1), 125. https://doi.org/10.1186/s13012-018-0815-9.CrossRefPubMed

Title: A Community-Partnered, Evidence-Based Approach to Improving Cancer Care Delivery for Low-Income and Minority Patients with Cancer
Authors: Manali Patel
Nevedal Andrea
Bhattacharya Jay
Tumaini R. Coker
Publication date: 01-10-2019
Publisher: Springer US
Keyword: Care
Published in: Journal of Community Health / Issue 5/2019
Print ISSN: 0094-5145
Electronic ISSN: 1573-3610
DOI: https://doi.org/10.1007/s10900-019-00632-x

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A Community-Partnered, Evidence-Based Approach to Improving Cancer Care Delivery for Low-Income and Minority Patients with Cancer

Abstract

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