Rural Cancer Survivorship Disparities June 11, Pam Baker DeGuzman, PhD, MBA, RN

Transcription

1 Rural Cancer Survivorship Disparities June 11, 2015 Presentation to the Cancer Action Coalition of Virginia Richmond, VA Pam Baker DeGuzman, PhD, MBA, RN

2 Disparities Differences in the incidence, prevalence, mortality, and burden of diseases that exist among specific population groups in the United States (National Cancer Institute). Race or ethnicity Gender Sexual identity Age Disability Socioeconomic status Geographic location

3 Disparities Differences in the incidence, prevalence, mortality, and burden of diseases that exist among specific population groups in the United States (National Cancer Institute) Race or ethnicity Gender Sexual identity Age Disability Socioeconomic status Geographic location

4 Common Sources of Cancer Lack of health care coverage Disparities Medically underserved populations are more likely to be diagnosed with late-stage diseases These might have been treated more effectively or cured if diagnosed earlier Low socioeconomic status Low SES affects cancer disparities more than race or ethnicity Predicts the likelihood of an individual's or a group's access to education, certain occupations, health insurance, and living conditions

5 Virginia Rural Cancer Survivors Over 1 million of Virginia s 8.2 million residents (12.9%) live in rural areas. In 2012, there were over 300,000 survivors in Virginia Nearly 40,000 cancer survivors living in rural Virginia

6 In Virginia Rural Virginians are far Poorer than Urban Virginians Per-capita income in rural areas is $33,532 compared to $48,377 in urban areas Rural poverty rate is 18.3% compared to 10.8% in urban areas.

7 Rural Cancer Disadvantage is Based on Lack of Geographic Access and Lack of Financial Access Logistical and financial challenges make it more difficult to ensure appropriate provision of services Rural cancer survivors travel long distances to screening and treatment sites Lack of financial resources exacerbated by lack of resources in their regions

8 Rural Cancer Patients Lack Resources to Maximize Care Informational needs Rural patients lack information about screening and education, clinical and psychosocial needs, transportation, and financial assistance Rural patients have more difficulty understanding the education they are given Psychosocial needs Survivors experience a lack of ongoing support, particularly for depression Financial needs U.S. rural survivors are poorer and more likely to be on Medicaid than their non-rural counterparts Have higher unemployment and lower household income

9 Rural Virginia Academic Cancer Center STAKEHOLDER ASSESSMENT

10 Stakeholder Assessment A stakeholder assessment was conducted at an academic cancer center in rural Central Virginia The purpose was to evaluate how well patients needs were being met, from multiple perspectives

11 Methods Quantitative: Patient surveys with Likert-scale response design were placed in waiting rooms across all Cancer Center sites Qualitative: Nearly 50 interviews and four focus groups were conducted and transcribed

12 Continuum of Cancer Care prevention screening diagnosis treatment extended survivorship Identification of barriers to care at each stage of the cancer care continuum

13 Patient Knowledge of Extended Survivorship Resources is Minimal extended survivorship

14 Provider Knowledge of Extended Survivorship Resources is Also Minimal We really try to follow, like the NCCN guidelines we usually dictate into our notes that this is the follow-up protocol we would recommend. I don t know how well some of the patients follow it, but you know, at least we do provide recommendations. - Medical Care Provider extended survivorship

15 Are We Looking in the Wrong Place? Barriers to Rural Survivorship Care May Begin During Treatment prevention screening diagnosis treatment extended survivorship

16 Our Care Providers Try to Minimize Rural, Low-Income Patients Financial Outlays During Treatment It s usually a month s income to make a trip to Charlottesville for some of these people. -Medical care provider A lot of patients are coming from 6 hours away and they re indigent or very low income, so to ask them to come back 2 or 3 times is very hard. -Medical care provider [Cancer patients] want the one stop shop they can get when they come here especially if they re traveling from 4, or 5 or 6 hours away. -Support Care Provider treatment

17 Appointment Stacking May Unintentionally Cause Rural Patients to Miss Support Care Providers During Treatment We have patients with head and neck cancer who can t swallow, we have patients in radiation whose chest wall is being irradiated and they can t swallow anything because they have esophagitis...who s called in nutrition? Nobody. -Support Care Provider They leave the clinic and I have to call them to [coordinate their care] over the phone and it s not ideal." Support Care Provider treatment

18 which may be linked to lack of tie-in to support care services during survivorship We have patients with head and neck cancer who can t swallow, we have patients in radiation whose chest wall is being irradiated and they can t swallow anything because they have esophagitis...who s called in nutrition? Nobody. -Support Care Provider They leave the clinic and I have to call them to [coordinate their care] over the phone and it s not ideal." Support Care Provider Sometimes I see [patients in the survivor phase] by accident. Sometimes they still come to support groups or they re across the street [in another part of the medical center], or they re here with a family member or they re just here for a follow-up in the system for another service. A lot of the ones I see are there to see the doctor and I just happen to be in clinic that day and see them. -Support Care Provider extended survivorship

19 Next Steps: Current Study Survivorship needs of Rural, Low-Income Breast Cancer Survivors Appointment stacking phenomenon Survivorship Care Plans

20 Next Steps: Current Study Survivorship needs of Rural, Low-Income Breast Cancer Survivors Appointment stacking phenomenon Survivorship Care Plans

21 Survivorship Care Plan The Commission on Cancer Standards for Accreditation requires Survivorship Care Plans (SCPs) for Patients with Cancer SCP A comprehensive care summary Follow-up plan At the completion of treatment Original goals were pared back due to widespread difficulty with implementation of SCPs 25% of patients should have an SCP by January 1, 2016

22 References Ferris LW. Accreditation committee clarifications for standard 3.3 survivorship care plan. Accessed January 15, American College of Surgeon Commission on Cancer. Cancer program standards 2012: Ensuring patient-centered care. Updated Accessed January 28, Rural Assistance Center. State guides: Virginia. State Guides: Virginia Web site. Accessed July 23, Howard AF, Smillie K, Turnbull K, et al. Access to medical and supportive care for rural and remote cancer survivors in northern british columbia. J Rural Health doi: /jrh.12064; /jrh Palmer NR, Geiger AM, Lu L, Case LD, Weaver KE. Impact of rural residence on forgoing healthcare after cancer because of cost. Cancer Epidemiol Biomarkers Prev. 2013;22(10): doi: / EPI ; / EPI Pesut B, Robinson CA, Bottorff JL, Fyles G, Broughton S. On the road again: Patient perspectives on commuting for palliative care. Palliative and Supportive Care. 2010;8(02): Lengerich EJ, Kluhsman BC, Bencivenga M, Allen R, Miele MB, Farace E. Development of community plans to enhance survivorship from colorectal cancer: Communitybased participatory research in rural communities. J Cancer Surviv. 2007;1(3): doi: /s y; /s y. Wilson SE, Andersen MR, Meischke H. Meeting the needs of rural breast cancer survivors: What still needs to be done? J Womens Health Gend Based. 2000;9(6): Franklin L, Belkora J, O'Donnell S, et al. Consultation support for rural women with breast cancer: Results of a community-based participatory research study. Patient Educ Couns. 2010;80(1): doi: /j.pec ; /j.pec Katz ML, Reiter PL, Corbin S, de Moor JS, Paskett ED, Shapiro CL. Are rural Ohio Appalachia cancer survivors needs different than urban cancer survivors? J Cancer Surviv. 2010;4(2): doi: /s ; /s Livaudais JC, Thompson B, Godina R, Islas I, Ibarra G, Coronado GD. A qualitative investigation of cancer survivorship experiences among rural hispanics. J Psychosoc Oncol. 2010;28(4): doi: / ; / Glasser M, Nielsen K, Smith SN, Gray C. Psychosocial needs of rural survivors of cancer and their partners. J Psychosoc Oncol. 2013;31(3): doi: / ; / Maiedema B, Tatemichi S, MacDonald I. Cancer follow-up care in new Brunswick: Cancer surveillance, support issues and fear of recurrence. Can J Rural Med. 2004;9(2): Paul CL, Hall AE, Carey ML, Cameron EC, Clinton-McHarg T. Access to care and impacts of cancer on daily life: Do they differ for metropolitan versus regional hematological cancer survivors? J Rural Health. 2013;29 Suppl 1:s doi: /jrh.12020; /jrh Wenzel J, Jones RA, Klimmek R, et al. Cancer support and resource needs among African American older adults. Clin J Oncol Nurs. 2012;16(4): doi: /12.CJON ; /12.CJON Schootman M, Homan S, Weaver KE, Jeffe DB, Yun S. The health and welfare of rural and urban cancer survivors in missouri. Prev Chronic Dis. 2013;10:E152. doi: /pcd ; /pcd Stricker CT, Jacobs LA, Risendal B, et al. Survivorship care planning after the institute of medicine recommendations: How are we faring? Journal of Cancer Survivorship. 2011;5(4): Dulko D, Pace CM, Dittus KL, et al. Barriers and facilitators to implementing cancer survivorship care plans. Oncol Nurs Forum. 2013;40(6): Accessed doi: