Community Cancer Needs Assessment

Transcription

1 Community Cancer Needs Assessment Standard 3.1 JEAN B. SELLERS, RN, MSN ADMINISTRATIVE CLINICAL DIRECTOR LINEBERGER COMPREHENSIVE CANCER CENTER MEGAN L. CARLSON, MPH LAY NAVIGATION PROGRAM MANAGER LINEBERGER COMPREHENSIVE CANCER CENTER DECEMBER 14, 2017 This document has been prepared to fulfill the requirements of the CoC Standard 3.1. It will be used to guide the UNC Cancer Committee to ensure all patients have access to high quality cancer care across the continuum.

2 Contents EXECUTIVE SUMMARY... 4 PURPOSE... 5 OVERVIEW OF NORTH CAROLINA... 5 POPULATION... 5 SERVICE AREA... 6 HEALTH DISPARITIES IN NORTH CAROLINA... 6 DEFINITION OF HEALTH DISPARITY... 6 CAUSES OF HEALTH DISPARITIES... 6 POVERTY IN NORTH CAROLINA... 7 HEALTH LITERACY IN NORTH CAROLINA... 9 CANCER BURDEN CANCER INCIDENCE IN NORTH CAROLINA CANCER MORTALITY IN NORTH CAROLINA CANCER SURVIVORSHIP IN NORTH CAROLINA CANCER RISK FACTORS TOBACCO USE IN NC AGING IN NC HUMAN PAPILLOMAVIRUS (HPV) OBESITY: NUTRITION AND PHYSICAL ACTIVITY BARRIERS TO CARE IN NC FINANCIAL TOXICITY IDENTIFIED FINANCIAL TOXICITY NEEDS OF THE PATIENTS & COMMUNITY IN PRIMARY UNC SERVICE AREA TRANSPORTATION LACK OF INTERNET ACCESS LACK OF COMMUNITY EDUCATIONAL PROGRAMS AND HEALTH FAIRS CARING FOR CANCER PATIENTS AT THE NC CANCER HOSPITAL PATIENT NAVIGATION AT THE NC CANCER HOSPITAL: STANDARD ONCOLOGY NURSE NAVIGATION EMERGENCY ROOM PATIENT NAVIGATION PROCESS AT THE NC CANCER HOSPITAL SUPPORT RESOURCES FOR CANCER PATIENTS AND THEIR CAREGIVERS DURING AND AFTER TREATMENT LAY NAVIGATION PROCESS PROGRAM SUCCESSES

3 PROGRAM CHALLENGES DISTRESS SCREENING AT THE NC CANCER HOSPITAL: STANDARD COMPREHENSIVE CANCER SUPPORT AT THE NC CANCER HOSPITAL CANCER SURVIVORSHIP AT THE NC CANCER HOSPITAL: STANDARD PALLIATIVE CARE AT THE NC CANCER HOSPITAL: STANDARD CURRENT STRATEGIES TO REDUCE THE BURDEN OF CANCER IN NORTH CAROLINA REDUCING THE BURDEN OF BREAST CANCER REDUCING THE BURDEN OF COLON CANCER REDUCING THE BURDEN OF LUNG CANCER REDUCING THE BURDEN OF PROSTATE CANCER IMPROVING CANCER OUTCOMES WITH LAY PATIENT NAVIGATION INTEGRATING CANCER SURVIVORSHIP CARE ACROSS NC VIRTUAL MULTIDISCIPLINARY TUMOR BOARDS STATEWIDE EDUCATIONAL OUTREACH PROGRAMS UNC CANCER NETWORK: TELEHEALTH LECTURES GET REAL AND HEEL EXPANDS TO MCCREARY CANCER CENTER PROMOTING SCALP MELANOMA AWARENESS NORTH CAROLINA ONCOLOGY NAVIGATOR ASSOCIATION CONFERENCES SUMMARY REFERENCES

4 Executive Summary The Commission on Cancer requires that the cancer committee conduct a Community Cancer Needs Assessment at least once every three years. The results will serve as the building blocks for navigation process development, implementation and evaluation. Important to note is that the standard focuses on the health disparities and navigation process which includes the continuum of care both inside and outside of the NC Cancer Hospital. This was conducted through analysis of available data identifying cancer disparities, cancer risk factors and barriers to care throughout North Carolina as well as reviewing current cancer navigation and survivorship processes and resources within the NC Cancer Hospital. The reach of the NC Cancer Hospital extends to all 100 counties in NC. For that reason, it is critical that we have coordinated and integrated care across system boundaries, especially for those who live in rural areas, have socioeconomic challenges and are facing significant health disparities. Ø Cancer is the leading cause of death in NC. Ø Many of our service area counties are predominantly rural. Ø The population is older than national averages and aging faster, so we will see an increasing percentage of older citizens in coming years. Ø NC has a significant number of people living in poverty as well as a high number of people with a low health literacy. Ø People living in poor, more rural areas are more vulnerable to cancer due to a host of factors, including lack of health care access. Ø Smaller cancer centers across the state report difficulty providing health fairs and community education due to lack of funding. Health literacy has been reported as a significant barrier by cancer centers across the state. Ø NC has a large African American population and this population is more likely to die from cancer than the Caucasian population. Ø The burden of cancer in NC is, on average, higher than that of the US. North Carolina s incidence and mortality rates exceed that of national rates for lung, female breast, prostate and melanoma skin cancer. Ø The overall cancer mortality rate in NC for all cancers has gone down 19.5% since This means more patients are alive five years after being diagnosed with cancer. There are multiple resources available to cancer survivors at the NC Cancer Hospital, including several survivorship clinics. Ø Many of the cancer clinics have reported a growing demand for cancer care and a shrinking cancer workforce. Lay navigation support has been expanded to assist oncology nurse navigators and inpatient nurses to ensure patients and caregivers are connected with local, state and national resources. Ø Studies at UNC and Duke report financial toxicity as a serious barrier and hardship for those initially diagnosed with cancer as well as those who have completed treatment. Ø A comprehensive listing of supportive and financial resources has been developed for cancer patients and survivors. It will be available to patients within the NC Cancer Hospital and across North Carolina. It is hoped this report will help guide the cancer committee on future recommendations and address opportunities identified. 4

5 Purpose Improving health outcomes for cancer patients living in North Carolina is the goal of UNC Lineberger Comprehensive Cancer Center. Many of our new and current programs are working to address cancer disparities, outcomes, screening rates, survivorship care and prevention. The purpose of this assessment is to identify the cancer-related needs and disparities within the population we serve as well as available resources to address barriers both within the state and at the NC Cancer Hospital. The results from this will serve as the building blocks for our cancer program to ensure that programs and processes meet the needs of all cancer patients. Overview of North Carolina Cancer is the leading cause of death in North Carolina. In 2015, it is estimated that there were 19,309 cancer related deaths which represents 21.7% of the overall death totals for the year. 3 Patients and caregivers face financial, emotional and physical effects, regardless of where they live. In addition, researchers from Duke and UNC have recently published studies that included data from providers in North Carolina which confirm patients with cancer continue to struggle with financial distress associated with care. As a result, some patients declare bankruptcy or stop treatment. Population North Carolina has a total population of 10,146, % are under 18 years and 15.5% are over 65 years. The minority population represents 36.5% with 21.3% being African American. Unadjusted unemployment rate stands at 5.2%, ranging from lowest to highest: 3.5% in Buncombe County (Asheville) to 8.6% in rural Scotland County (compared to the overall US employment rate of 4.7%). 6 Between 2010 and 2016, Hispanics of all races became a larger portion of North Carolina s population, while the proportion of Caucasians decreased and African Americans remained steady. In 2016, Hispanics made up 9.2% of the population, up from 8.4% in Caucasians remain the largest race at 63.5% last year, down from 65.3% in African Americans accounted for about 21.3%. 6 The Hispanic population grew by 127,000 statewide since 2010, to an estimated 932,221. Duplin County in the eastern part of the state has the largest proportion of Hispanics, at 21.9%, while Gates County in the northeastern part of the state has the lowest at about 1.5%. 6 The table below reflects the population by race in North Carolina: Source: US Census Data,

6 Service Area NC Cancer Hospital and Lineberger Comprehensive Cancer Center provide state-of-the-art, patient and family centered care, support the conduct of cancer clinical research and education, enhance access to improved cancer intervention and advance the standard of cancer care regionally and beyond. Patients who travel for oncology treatment range from local to out of state. In 2016, a significant proportion of our patient population came from the following counties: Primary Service Area/Patients by Zip Code Wake (801) 6. Chatham (232) 11. Harnett (144) 2. Orange (473) 7. Durham (183) 12. Out of state (134) 3. Guilford (343) 8. Johnston (153) 13. Moore (114) 4. Alamance (267) 9. Randolph (150) 14. Robeson (102) 5. Cumberland (254) 10. Lee (146) 15. Caldwell (97) Source: NC Cancer Hospital Tumor Registry Health Disparities in North Carolina Improved patient outcomes Define Health Disparities Use results for program development, implementation & evaluation Identify Barriers to Care List Resources & Resource Gaps Source: American College of Surgeons, 2014 Definition of Health Disparity A population is a health disparity population if there is a significant disparity in the overall rate of disease, incidence, prevalence, morbidity, mortality or survival rates in the population as compared to the health status of the general population. 11 Causes of Health Disparities I. Socioeconomic Status: Income and educational attainment on average are lower for ethnic/racial minority groups II. Culture: Lack of trust 6

7 III. IV. Diminished access to and utilization of healthcare Utilization of Preventive Care African-Americans have the highest incidence of and mortality from colorectal and lung cancers. 8 African-American men are at the highest risk of developing a more aggressive form of prostate cancer. 8 African-American women are more likely than those in other ethnic groups to develop triple-negative breast cancer. 8 African American patients are less often treated with necessary surgery for cancers such as breast or lung than their counterparts of other ethnicities, due to factors including their own belief system, inadequate communication with physicians, lower health literacy and health provider bias. 8 Hospice utilization is lower among African Americans than Caucasians, across all age groups. 8 Hispanics and Asian-Americans are disproportionately affected by cancers caused by infectious agents such as viruses. These include HPV. Poverty in North Carolina It is estimated that 22% of the population is without health insurance and under the age of 65. North Carolina s poverty rate was 16.4% in 2015, according to a report from the Budget & Tax Center, a project of the NC Justice Center. Across the state, it is estimated that 1.6 million residents live in poverty; meaning a family of four living on $24,250 or less per year find affording the basics such as rent, food and utilities to be a daily challenge. 12 Source: NC Rural Center 7

8 Source: NC Justice Center, 2015 There are 100 counties in NC which represents the population that is served by the NC Cancer Hospital. Eighty of the counties are designated rural as each has an average population density of 250 people per square mile or less. Fourteen counties are suburban with an average population density between 250 and 750 people per square mile. Six counties are urban with population densities between 750 and 1,933 people per square mile. Seventeen of our counties do not have a hospital. 6 According to America s Health Rankings, released in 2017, NC s health status ranks 33 rd in the country. 13 The health status ranking of NC in the nation is closely tied to the health status of minorities and other underserved population groups. 8

9 Health Literacy in North Carolina The problem of inadequate literacy is especially pronounced in North Carolina. More than 1 million adults in NC experience difficulty understanding and using health information. State levels estimates place NC as 41 st in terms of adequate adult literacy levels. 14 Research indicates that low health literacy contributes to many healthcare problems which may be associated with the following: Lack of knowledge and understanding about health conditions and services Inability to implement appropriate self-care activities Difficulty understanding medication instructions and adhering to treatment Lower utilization of preventive care and services Increased hospitalizations and health care costs Worse health outcomes and increased mortality 9

10 Cancer Burden The burden of cancer in NC is, on average, higher than that of the US. North Carolina s incidence and mortality rates exceed that of national rates for lung, female breast, prostate and melanoma skin cancer. Lung Cancer o Lung cancer was the leading cause of cancer deaths in NC in 2015 (28.3%). It is estimated that 8,888 people will be diagnosed with lung cancer and 6,168 people will die from lung cancer in 2017 (NC State Center for Health Statistics). According to the CDC, 80-90% of lung cancer cases are attributable to smoking. 7 Colorectal Cancer o Colorectal Cancer was the second leading cause of cancer deaths in NC in 2015 (8.6%). It is estimated that 4,602 people will be diagnosed with colorectal cancer and 1,693 will die from colorectal cancer in Breast Cancer o Breast Cancer is the most frequently diagnosed cancer and the second leading cause of cancer deaths in women in NC. In 2017, an estimated 10,279 women will be diagnosed with breast cancer and 1,428 women will die from the disease. 7 Prostate Cancer o Prostate Cancer was the 5 th leading cause of cancer deaths in NC in 2015 (4.7%). It is the most frequently diagnosed cancer in men. It is estimated that 7,577 males in NC will be diagnosed with prostate cancer and 990 males will die from the disease in Melanoma Skin Cancer o Melanoma is the most serious form of skin cancer, causing 69.7% of all skin cancer deaths in NC in The rate of new melanoma diagnoses rose rapidly in NC from , at an average increase of more than 5% per year. From , the increase in melanoma diagnoses slowed to an average of 1.1% per year. It is estimated that 2805 North Carolinians will be diagnosed with and 323 will die from melanoma in Cancer Incidence in North Carolina Lung, breast (female), colorectal, prostate and melanoma are the most common cancers within North Carolina. 5 Cancer Incidence by Age Group in North Carolina Leukemia Non-Hodgkin Lymphoma Kidney Cacncer Types Ovarian Cervical Melanoma Prostate Breast Colorectal Lung Age 0-19 Age Age Age 65+ Rate per 100,000 Source: 2014 Cancer Incidence and Mortality in North Carolina, NC Cancer Registry 10

11 North Carolina All Cancer Incidence Rates Cherokee Graham Clay Swain Macon Alleghany Ashe Northampton Gates Surry Stokes Rockingham Caswell Person Warren Vance Hertford Watauga Halifax Wilkes Granville Yadkin Forsyth Mitchell Avery Orange Guilford Franklin Alamance Bertie Caldwell Durham Nash Yancey Alexander Davie Madison Edgecombe Iredell Martin Washington Burke Wake Randolph Wilson McDowell Chatham Buncombe Catawba Rowan Haywood Pitt Beaufort Lincoln Johnston Greene Rutherford Lee Henderson Cabarrus Harnett Wayne Jackson Polk Cleveland Stanly Gaston Moore Transylvania Montgomery Lenoir Craven Mecklenburg Pamlico Cumberland Jones Richmond Hoke Sampson Union Anson Duplin Davidson Chowan Camden Pasquotank Perquimans Currituck Tyrrell Dare Hyde Scotland Onslow Carteret Age Adjusted Rates per 100,000 Population Robeson Bladen Columbus Brunswick Pender New Hanover December 2016 Note: Information is subject to change as files are updated. Cancer Mortality in North Carolina North Carolina 2015 Cancer Deaths by Site Colon/Rectum, 9% Other Cancers, 44% Pancreas, 7% Lung/Bronchus, 28% Prostate, 5% Female Breast, 7% Percentages may not add up to 100 percent due to rounding. Source: NC Cancer Profiles, April 2017 According to the CDC, cancer became the leading cause of death in 2007 followed by heart disease in NC. 7 Although cancer mortality rates have been decreasing, incidence rates of cancer have been increasing over the past decade. Additionally, lung cancer continues to be the leading cancer-causing death in North Carolina. 11

12 Overall, males living in NC had a greater cancer mortality rate than females. In 2016, 19,526 individuals died from cancer. This reflects a death rate of Cancer Mortality by Age Group in North Carolina Leukemia Non-Hodgkin Lymphoma Kidney Cancer Types Ovarian Cervical Melanoma Prostate Breast Colorectal Lung Age 0-19 Age Age Age 65+ Rate per 100,000 Source: 2014 Cancer Incidence and Mortality in North Carolina, NC Cancer Registry North Carolina All Cancer Mortality Rates Cherokee Graham Clay Swain Macon Alleghany Ashe Northampton Gates Surry Stokes Rockingham Caswell Person Warren Vance Hertford Watauga Halifax Wilkes Granville Yadkin Forsyth Mitchell Avery Orange Guilford Franklin Alamance Bertie Caldwell Durham Nash Yancey Alexander Davie Madison Edgecombe Iredell Martin Washington Burke Wake Randolph Wilson McDowell Chatham Buncombe Catawba Rowan Haywood Pitt Beaufort Lincoln Johnston Greene Rutherford Lee Henderson Cabarrus Harnett Wayne Jackson Polk Cleveland Stanly Gaston Moore Transylvania Montgomery Lenoir Craven Mecklenburg Pamlico Cumberland Richmond Jones Union Hoke Sampson Anson Duplin Davidson Chowan Camden Pasquotank Perquimans Currituck Tyrrell Dare Hyde Scotland Onslow Carteret Robeson Bladen Age Adjusted Rates per 100,000 Population Columbus Brunswick Pender New Hanover North Carolina Resident Data State Center for Health Statistics 12

13 Cancer Survivorship in North Carolina According to the American Cancer Society Survivorship Facts and Figures, there are 428,800 cancer survivors in NC. 15 North Carolina Cancer Prevention and Control Branch, Advisory Committee on Cancer Coordination and Control hosts an annual state-wide Cancer Survivorship Summit. Cancer Risk Factors Cancer risk factors include age, family history of cancer, poor diet, being overweight, alcohol, tobacco use, exposure to sunlight, radiation, chemical, viruses and bacteria. This is important as the American Cancer Society estimates that about 30% of cancers could be prevented by eliminating tobacco use and another 35% could be prevented by reducing obesity, increasing physical activity and eating a healthy diet. 2 Tobacco Use in NC Lung Cancer is one of the most preventable types of cancers. With a majority of lung cancer deaths being attributed to smoking, tobacco use is a significant risk factor in North Carolina. Smoking appears to decrease with age, with the highest percentage of smokers between the age of 18 and CIGARETTE USE *1-2 Smoking Status among Respondents in North Carolina by Age Groups Age Group Total Respondents Current Smoker Former Smoker , % 14.4% % 20.1% , % 22.1% , % 31.8% , % 43.2% % 43.4% All Ages 6, % 28.4% Data Source: Behavioral Risk Factor Surveillance System, North Carolina 2015 Source: Tobacco in NC Fact Sheet, 2017 Aging in NC Aging is the single most significant risk factor for a number of cancers for both men and women. North Carolina s median age where half the population is younger and half the population is older jumped from 37.4 to 38.7 between 2010 and 2016, making it the 20th oldest state tied with Kentucky and Tennessee, according to estimates released by the US Census Bureau. 6 Utah was the youngest state, at 30.8, while Maine was the oldest, at

14 Advancing age is the most important risk factor for cancer overall and for most types of cancer. The median age of cancer diagnosis is 66 years. One quarter of new cancer cases are diagnosed in people years of age. 6 Human Papillomavirus (HPV) 17 HPV Cancer & Prevention Profile North Carolina Percentage of Cancers Probably Caused by HPV 1 Cervix Anus Rectum Vagina Oropharynx Vulva Penis HPV causes nearly all cervical cancers and many cancers of the vagina, vulva, penis, anus, rectum, and oropharynx. 1 Take Action! 81% of new HPV-associated cancer cases diagnosed each year could be prevented by HPV vaccination 1 Gaps in HPV vaccination coverage compared to other recommended vaccines for adolescents (Tdap and MenACWY), reveal missed opportunities. Use local data to inform efforts to reduce missed opportunities in HPV vaccination. State vs. U.S. HPV-Associated Cancer Incidence per 100,000 Population ( ) 2 Oropharyngeal Cancer* NC 18.7 U.S % 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Oropharyngeal Cancer* NC 6.7 U.S. 6.3 Cervical Cancer NC 7.0 U.S. 7.6 HPV, Tdap and MenACWY Vaccination Coverage among Adolescents Years (2015 ) 3 Tdap MenACWY 1 Dose HPV (Female) 1 Dose HPV (Male) 3 Dose HPV (Female) Healthy People Dose HPV (Male) A strong provider recommendation is the most effective method for increasing HPV vaccination. Recommend the HPV vaccine the same way you recommend the other adolescent vaccines. Try saying, Your child is due for vaccinations today to help protect against meningitis, HPV cancers and pertussis. We ll give those shots at the end of the visit. Review the back of this document for tips on addressing parents top questions about the HPV vaccine. Visit bit.ly/hpvvaxrecs for the most up-to-date HPV vaccination schedules from CDC including new 2-dose HPV vaccine schedule recommendation for young adolescents. Consider conducting quality improvement activities around HPV vaccination, including utilizing Immunization Information Systems (IIS) and implementing reminder/recall interventions to increase HPV vaccination coverage. This publication was supported by Cooperative Agreement Number 1H23IP , funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services. 1. Saraiya M., Unger E.R., Thompson T.D., Lynch C.F., Steina M., Watson M.Goodman M. T. (2015) US Assessment of HPV types in cancers: Implications for current and 9-valent HPV vaccines. Journal of the National Cancer Institute, 107(6):djv United States Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute. (2014). United States Cancer Statistics: cancer incidence. WONDER Online Database. Retrieved from 3. Reagan-Steiner, S., Yankey, D., Jeyarajah, J., Elam-Evans, L.D., Curtis, D., MacNeil, J.Singleton, J.A. (2016). National, regional, state and selected local area vaccination coverage among adolescents aged years United States, Morbidity and Mortality Weekly Report, 65(33), Retrieved from NC US For more information, contact: 14

15 Obesity: Nutrition and Physical Activity North Carolina has the 16 th highest adult obesity rate in the nation. 18 North Carolina s adult obesity rate is currently 31.8%, up from 20.9% in 2000 and from 12.3% in Eating a variety of healthful foods, maintaining a healthy weight and limiting alcoholic consumption are recommended by the American Cancer Society for cancer prevention. 2 Barriers to Care in NC The American College of Surgeons, Commission on Cancer has identified the following 3 categories for common barriers to care experienced by cancer patients. 23 Source: Cancer Program Standards: Ensuring Patient-Centered Care, 2016 Achieving health equity depends on removing barriers to care. The following are common barriers reported by Cancer Service Line Directors have been identified as a top priority for cancer centers within our statewide lay navigation program. Financial Toxicity Financial toxicity is defined as costs related to cancer care that diminish quality of life and impeded delivery of the highest quality care. 19 Financial distress may be considered an adverse effect of treatment that can affect 15

16 patient well-being and quality of care. Cost of care may include medication, deductible, copay, lodging, premium, transportation, coinsurance, etc. 60% of Americans filing for bankruptcy claim medical debt as cause of bankruptcy. 19 Patient Barriers to Using Financial Resources: 19 Identified Financial Toxicity Needs of the Patients and Community in Primary UNC Service Area A qualitative study of resources available to social workers and financial counselors at Duke Cancer Institute in Durham was conducted by researchers. Focus groups were held at Duke University. Four themes emerged: Frustration over lack of financial resources and eligibility criteria Institutional barriers to obtaining assistance such as process inefficiencies Inadequate resources to identify and refer for services Limitations by insurance coverage of patients The most frequent out-of-pocket assistance requests were for prescription drug copayments, insurance premiums (e.g., COBRA), and travel expenses including gas, lodging, parking and food. Other needs include dental assistance, utility and housing costs, unexpected events such as automobile repairs, medical supplies, housework and finding affordable private duty care. In addition, many patients reported being too embarrassed to ask for help or being unaware of financial resources that may be available to them. 19 Researchers at UNC conducted a real-time online survey of attendees at an oncology navigators association conference. Seventy-eight respondents participated in the survey, reporting that on average 75% of their patients expressed some degree of financial toxicity related to their cancer. Commonly identified barriers for patients obtaining assistance included lack of resources, lack of knowledge about resources and complex/duplicative paperwork. 20 Transportation Transportation is another significant barrier to care. While several groups report assisting with transportation, the rural communities have the greatest need and the least amount of resources. Road to Recovery is sponsored by the American Cancer Society. Volunteers provide rides to identified cancer patients for medical appointment. During January and September of 2017, 33 counties in NC reported an active Road to Recovery Program. 21 Active was defined as providing more than 10 rides during this time frame. 16

17 2500 ROAD TO RECOVERY N= Number of Rides Alamance Bertie Brunswick 341 Buncombe 22 Cabarrus Carteret Catawba Clay Craven Cumberland Davidson Davie Durham 313 Edgecombe-NC Forsyth-NC Franklin-NC Gaston-NC Granville-NC Greene-NC Guilford-NC Halifax-NC Harnett-NC Henderson County Hertford Iredell Jones 95 Lenoir 586 Mecklenburg 89 Nash-NC 499 New Hanover Northampton Onslow Orange Pamlico-NC Pender-NC Pitt-NC Rockingham-NC Rowan-NC 289 Tyrrell-NC 18 Union-NC 567 Wake-NC 10 Washington-NC 209 Wayne-NC 20 Wilson-NC Source: correspondence with American Cancer Society, 2017 Lack of Internet Access In NC, rural cancer center staff report cancer resources available on the internet are difficult for many patients to access, especially for rural communities that account for nearly 34 percent of the NC population. 25 Patients are directed to the local library and senior centers for additional support with understanding how to locate internet resources. Lack of Community Educational Programs and Health Fairs Cancer service line directors from the lay navigation grant report decreased funding associated with community outreach efforts. Targeting communities with additional education is important as the American Cancer Society estimates that about 30% of cancers could be prevented by eliminating tobacco use and another 35% could be prevented by reducing obesity, increasing physical activity and eating a healthy diet. 2 Caring for Cancer Patients at the NC Cancer Hospital The NC Cancer Hospital is the state s only public cancer hospital. The population that is served comes from all 100 counties across North Carolina. Currently, annual patient visits are over 170, All types of cancer are treated with many providing multidisciplinary programs which allows adults to have the benefit of seeing many medical specialists in one place, often in one visit. The counties most served by the NC Cancer Hospital are listed in the following table: 17

18 Total New and Return Visits at NC Cancer Hospital Fiscal Year 2016 Fiscal Year 2017 New Return New Return Total New/Return Total Encounters NEW & RETURN VISIT TOTALS NC CANCER HOSPITAL Fiscal Year 2016 New Fiscal Year 2016 Return Fiscal Year 2017 New Fiscal Year 2017 Return VISITS CLINICS Source: UNC EPIC Data,

19 Oral Cavity Lip Tongue Oropharynx Hypopharynx Other Digestive System Esophagus Stomach Colon Rectum Anus/Anal Canal Liver Pancreas Other Respiratory System Nasal/Sinus Larynx Other Lung/Bronc-Small Cell Lung/Bronc-Non Small Cell Other Bronchus & Lung Blood & Bone Marrow Leukemia Multiple Myeloma Other Bone Connect/Soft Tissue Skin Melanoma Other Breast Female Genital Cervix Uteri Corpus Uteri Ovary Vulva Other Male Genital Prostate Testis Other Urinary System Bladder Kidney/Renal Other Brain & Cns Brain (Benign) Brain (Malignant) Other Endocrine Thyroid Other Lymphatic System Hodgkin's Disease Non-Hodgkin's Unknown Primary Other/Ill-Defined ANALYTICAL CANCER CASES NC CANCER HOSPITAL, 2016 N=4987 Type of Cancer Source: NC Cancer Hospital Tumor Registry Number of Cases 19

20 Oncology Nurse Navigation Patient Navigation at the NC Cancer Hospital Standard 3.1 Cancer patients present in a variety of locations across the NC Healthcare System. Defined locations include the inpatient and outpatient clinics of the NC Cancer Hospital, the Emergency Room and when admitted to Memorial Hospital. Twenty-Five Oncology Nurse Navigators support patients in the following programs: Breast Bone & Soft Tissues GI GU Head and Neck Hematology Malignancy Program Neuro Oncology Skin Cancer & Melanoma Program Thoracic UNC Patient & Family Resource Center Emergency Room In addition, the UNC Department of Emergency Medicine serves critical patients from across the state and region. It is only 1 of 5 designated Level 1 Trauma Centers in NC as well as the state Burn Center and JCHAO Stroke Center. The department sees volumes of approximately 55,000 adults and 15,000 pediatric patients in a given year, with an admittance rate of 30%. 5 It is estimated that of the total volume of patients seen in the Emergency Room, approximately 5% would include oncology patients. Given the numbers, it is estimated that 3,500 oncology patients present to the Emergency Room in a given year. It must be noted at this time: patient navigation is not available for oncology patients in the ER. Lay Patient Navigation The UNC model of lay patient navigation includes 32 navigators who have provided over 1800 hours in the last year. Lay navigators include retired health care providers, members from the community, pre-med and prenursing students, cancer survivors and caregivers. Working in tandem with either the oncology nurse navigator or clinic nurse, lay navigators meet with patients to identify non-clinical barriers to care and then link patients to available cancer resources. Lay Patient Navigators provide support in the following clinics: Breast GI GU Head and Neck Hematology Malignancy Program Inpatient Units (4ONC & BMT) Radiation Oncology Pediatric Oncology Thoracic 20

21 Patient Navigation Process at the NC Cancer Hospital UNC CANCER CARE MODEL OF PATIENT NAVIGATION UNC Model of Navigation is a process that includes oncology nurse navigators and lay navigators working in tandem to address barriers to care. Resources are provided either on-site or by referral to community, state, or national organizations. PORTAL OF ENTRY Outpatient Clinics: Breast Program BARRIERS TO CARE Oncology Nurse Navigators Lay Navigators Financial Communication Bone & Soft Tissue Program Head and Neck Heme/Onc GI GU GYN/ONC Neuro Oncology Program Pediatric Oncology Program Skin Cancer & Melanoma Program Radiation Oncology Program Thoracic Oncology Program Inpatient: 4 ONC BMT Health Care System Housing/Accommodations Transportation NAVIGATION TEAM MEMBERS Low health literacy Education Oncology Nurses Social Workers SURVIVORSHIP -Cancer Transitions -Breast Survivorship Clinic -Testicular Survivorship Clinic Fear/distrust Lack of social support Financial Counselors Chaplains Dietician CCSP Mental Health Professionals Patient Assistance Coordinator CANCER RESOURCES Surgeons Cancer Resource Sheet Cancer Resource Guide New Patient Binder -Adult Supportive Care Clinic Patient and Family Resource Center Pharmacists Physicians PAs; APNs Financial Counselors Social Workers Palliative Care Team Pastoral Care Adolescents & Young Adult SW PALLIATIVE CARE -UNC Inpatient Palliative Care Program Get Real and Heel Oncology Nutrition Program -Pediatric Palliative Care Program -Goals of Care -Advanced Care Planning HOSPICE Freeman & Rodrigues, 2011, Cancer 117(15) J. Sellers, M. Carlson, 2017 Support Resources for Cancer Patients and their Caregivers During and After Treatment Connecting patients and caregivers with reliable support resources is a critical part of the navigation process. The Support Resource Guide for cancer patients was developed in 2012 by UNC Cancer Network and has been utilized within the cancer program. The revised edition has been expanded to include support resources available across the continuum of care. It will be available to patients within the NC Cancer Hospital and across NC both in print and on the web. Suppor t Resources for C A N C E R P A T I E N T S and T H E I R C A R E G I V E R S D U R I N G and A F T E R T R E A T M E N T 21

22 Lay Navigation Process Lay Navigator Meets with Identified New Patients New Patient Appointments Meet with oncologist, oncology nurse navigator and other members of the cancer team Meet with Lay Patient Navigator Oncology Nurse reviews patient that is appropriate for lay navigation support Introduce him/herself Access for non-clinical and financial barriers to care Explain resources available to patient Provide Cancer Patient Resource Guide Capture encounter Encourage patient to visit Cancer Resource Center J. Sellers, M. Carlson, 2017 Program successes Identified resource-efficient ways to extend navigation: Expansion of lay patient navigation model to include pre-med students and retired health care volunteers across identified outpatient and inpatient areas. Leverage clinic & support staff to maximize navigator role: Development of RN Triage Line & Infusion Urgent Care. Used data to justify role scope: Time study to understand ONN activities and reinforce goals of navigation program. Developed state-wide Support Resources Guide for cancer patients and their caregivers during and after treatment. Developed a one-page tool to quickly help patients connect with available cancer support resources. Referral patterns to the Patient and Family Resource Center have increased allowing the provision of additional support to patients and caregivers. This includes a website dedicated for caregiver support. Program challenges Sustainability with growing volumes & rising health care cost (Navigators have high caseloads, high patient acuity and lacks value-based pathways). Scope creep: Model underutilizes clinic RN s while overburdening ONN s with administrative and provide-oriented tasks. Some departments do not utilize ONN s, including: Gyn/Onc, Radiation Therapy, Ped/Onc, Inpatient Setting, and the Emergency Department. 22

23 Emergency Department/Epic does not identify oncology patients upon admission nor is there a formal navigation process. Data limitations: Unable to measure the impact of navigators on cost and quality. Challenges with PCP s resuming patient care following treatment completion. Distress Screening at the NC Cancer Hospital Standard 3.2 The NCCN Distress Thermometer has been incorporated into Epic as the preferred screening tool. New patients in identified outpatient clinics are screened for distress on their initial visit. Patients in radiation oncology are screened on the first and last visit. Patients who report problems will then have a further assessment to identify and examine the psychological, behavioral and/or social problems that interfere with their ability to participate fully in their health care, manage their illness and its consequences. When indicated, referrals are made to CCSP (for a mental health assessment or other need), Patient and Family Resource Center, Social Services and/or Pastoral Care for further evaluation/intervention/referral. Comprehensive Cancer Support at the NC Cancer Hospital UNC Lineberger s Comprehensive Cancer Support Program (CCSP) is a multidisciplinary program dedicated to helping patients, caregivers and families with cancer treatment, recovery and survivorship. Our home base is on the first floor of the N.C. Cancer Hospital, the Patient and Family Resource Center (PFRC). Services include multiple programs and services including: counseling and mental health services, education, integrative medicine-yoga, massage, etc., supportive care, exercise, caregiver support and nutrition support, survivorship programs, and more (

24 Cancer Survivorship at the NC Cancer Hospital Standard 3.3 Survivorship care plan templates have been created to be delivered by the care team. Different approaches have been piloted to have SCP more routinely delivered. A team is working on development of a sustainable process that will ensure consistency among programs. Two adult cancer survivorship clinics are offered at the NC Cancer Hospital: Ø Breast Cancer Survivorship Clinic (½ day a week) Ø Testicular Cancer Survivorship Clinic (monthly) Additional support for cancer survivors is offered through Cancer Transitions, a free program that runs for four weeks. This is led by staff at UNC and includes information on nutrition, exercise, coping with stress and medical care and is offered twice a year. An internal survivorship resource directory, highlighting providers and resources that address delayed side effects of the illness and treatment has been developed. This will ensure all healthcare providers can play an active role in directing cancer survivors to the appropriate referral based upon their identified need. Palliative Care at the NC Cancer Hospital Standard 2.4 UNC Palliative Care provides compassionate care, innovative teaching and pioneering research to relieve the suffering for patients with serious illness and their loved ones. The following services are offered: Inpatient consultation services across the UNC Health Care System Outpatient consultation services across the NC Cancer Hospital Weekly educational programs for students, residents, fellows, faculty, and staff Current Strategies to Reduce the Burden of Cancer in North Carolina Reducing the Burden of Breast Cancer 3 Louise Henderson, PhD, has shown that uninsured women under age 65 who received their mammogram at a community screening clinics in NC had a 60% higher chance of not having a follow-up within the recommended 60 days of a positive mammogram. Even after a year, they were still 53% less likely to receive follow up. Reducing the Burden of Colon Cancer 3 Colon cancer screening is effective, but screening rates are not as high as they should be in NC. The Carolina Cancer Screening Initiative, led by Dan Reuland, MD, aims to implement evidence-based cancer screening programs to reduce the cancer burden among North Carolinians. A 2015 study identified an 11-county area of northeastern NC as one of three hotspots in the country with elevated colorectal cancer death rates. This is 24

25 an identified focus which will address the geographic disparity, as well as racial and ethnic disparities that negatively impact colorectal cancer screening and mortality in NC. Additional program initiatives include: Working with health care leaders to address screening barriers in Hertford and surrounding counties in northeastern NC to improve access to endoscopy services in the region. Partnership with Community Care of NC and the Mecklenburg County Health Department to boost colon cancer screening rates for Medicaid recipients in Mecklenburg County. Further testing of a bilingual video about screening options and one-on-one patient navigation support to help patients get reminders or scheduled for screening. This will target the minority population who are low income, on Medicaid or lacking insurance. In partnership with the NC American Indian Health Board, researchers are investigating individual and sociocultural factors that influence rural Eastern American Indian s colorectal cancer screening decision. This may include adapting a general population version of a colorectal cancer screening decision aid for their community. Reducing the Burden of Lung Cancer 3 Smoking through cancer treatment can increase risk for recurrence and secondary cancers. Additionally, it is linked to worsened treatment side effects from radiation, chemotherapy and even surgery. NCI has awarded Adam Goldstein, MD, MPH and his team, a two-year grant to expand tobacco cessation treatment services for patients at the NC Cancer Hospital who use tobacco produces. It is anticipated that more than 2,500 new and existing cancer patients will be offered intensive counseling and medication guidance. This support will be extended to family members as well. Rebecca Williams, MHS, PhD, has studied online tobacco sales and reported that nearly 92% of Internet vendors sold cigarettes to underage teens-showing a clear critical need for federal regulations of the online cigarette market. Even though many online cigarette sellers have moved overseas in the wake of the federal regulation, online tobacco sales to minors continues. Nearly one in three minors could buy cigarettes, all developed by the US Postal Service which is in violation of federal law, from overseas sellers. Reducing the Burden of Prostate Cancer 3 We know that for many men facing a diagnosis of early-stage prostate cancer, treatment decisions are often influenced by potential quality of life issues. Dr. Ronald Chen has led a study that identifies distinct patterns of side effects associated with different treatment strategies that patients could use to help guide their treatment decision. This helps to ensure shared decision making that is individualized to ensure treatment is based on what is most important to the patient. Improving Cancer Outcomes with Lay Patient Navigation 3 Jean Sellers, RN, MSN and Thomas Shea, MD will be leading the implementation of lay patient navigation programs at 11 sites across NC. This cost-effective model was initially developed based upon their earlier work from in the Outer Banks. Volunteer lay patient navigators will be carefully selected, trained and integrated into cancer clinics and communities providing additional non-clinical support that will address barriers to care and connecting patients with available financial and other cancer support resources at a local, state and national level. 25

26 Integrating Cancer Survivorship Care across NC 3 NC Cancer Survivorship Action Network offers cancer survivors and their loved ones a free, 4- week educational program on nutrition, exercise, coping with stress and medical care. Led by Donald Rosenstein, MD, this program seeks to engage survivors to smooth the transition from active treatment. Since 2014, 42 group leaders have been trained from 26 sites across NC. This has resulted in 667 program participants (cancer survivors and caregivers). Virtual Multidisciplinary Tumor Boards UNC Cancer Network extends the reach of UNC experts to 42 sites in more than 20 communities across the state. Physicians can videoconference with a team of UNC expert from a wide variety of specialists who meet and discuss treatment plans for patients during weekly Multidisciplinary Oncology Tumor Boards. UNC Virtual Tumor Board Schedule Monday Tuesday Wednesday Thursday Friday GI 7:15-9:00 AM Thoracic 7:30-8:30 AM Breast 7:30-9:00 AM Head/Neck 7:00-9:00 AM Hem Onc 4:00-5:00 PM Pediatrics 4:00-5:00 PM Neuro-Oncology 7:30-8:30 AM Statewide Educational Outreach Programs UNC Cancer Network: Telehealth Lectures All tele-health medical and community lectures are recorded and available for later viewing at unccn.org. Telehealth Medical Lectures Bi-monthly telehealth CME oncology related educational lectures are broadcast to approximately 13 sites across NC. The average number of participants are at 81. This includes those that connect with Go-To- Webinar. Telehealth Community Lunch and Learns Monthly community educational lectures provide topics related to cancer prevention and risk awareness as well other topics including finding financial resources, understanding genetic testing, clinical trials awareness and others. Four sites connect regularly and include: The Outer Banks Hospital in Nags Head 26

27 Carteret Health Care in Morehead City McCreary Cancer Center in Lenoir The Chapel Hill YMCA Get Real and HEEL Expands to McCreary Cancer Center During the fall of 2017, fitness trainers from the Get Real & HEEL program at UNC Chapel Hill coordinated with the staff at the UNC Cancer Network and staff at the McCreary Cancer Center to deliver 25 separate training sessions to approximately ten breast cancer survivors at the McCreary Cancer Center with Caldwell UNC Health Care. 22,23 During each session, trainers delivered live trainings to patients at McCreary, using interactive video conferencing. The McCreary participants had all needed fitness equipment at their site, so that they could fully benefit from the exercises taught from the Chapel Hill fitness studio. Promoting Scalp Melanoma Awareness On May 23 rd, 2016, North Carolina hair and health care providers came together from across the state for the first live webinar targeting scalp melanoma. Over 150 cosmetology students, hair dressers, barbers and health care providers participated in a live presentation by David Ollila, MD and Nancy Thomas, MD. Targeting hair care professionals has the potential to increase the early detection of skin cancer on areas that are difficult to check including the scalp and neck. Lives can be saved when melanoma is caught early. -Dr. David Ollila, MD, 2016 North Carolina Oncology Navigator Association (NCONA) north carolina ONCOLOGY NAVIGATOR association UNC had been proactive in supporting NCONA since its inception in Today, the goal of the association continues to be hosting an annual conference for clinical and non-clinical patient navigators across North Carolina. On June 23 rd, 2017, more than 300 clinical and non-clinical patient navigators gathered in Chapel Hill from across NC for the annual NCONA conference: Navigating Palliative Care in Health Systems and the Community. On April 3, 2017, N.C. Gov. Roy Cooper declared April as Metastatic Breast Cancer Awareness Month in North Carolina to bring attention to this second-leading cause of cancer death among women. UNC Lineberger researchers joined First Lady Kristin Cooper at the Executive Mansion for an educational luncheon hosted by the North Carolina Oncology Navigator Association. 27

28 Conferences I live in a rural area and it s difficult to get accurate information regarding the needs of our cancer patients. This workshop was exactly what I was seeking. Thank you. -Coping with Cancer attendee,

29 Summary As an NCI-designated comprehensive cancer center, UNC Lineberger Comprehensive Cancer Center is already leading the state in research, technology and patient care. Our state has a diverse population in race and socioeconomic backgrounds. This is a population that encounters significant barriers to access to appropriate health services. We will continue these efforts to enhance delivery and access to cancer treatment and preventive services for patients, their families and persons at risk, not only at the NC Cancer Hospital, but across North Carolina. 29

30 References 1. NCI State Cancer Profiles 2. American Cancer Society 2017: Facts & Figures; 3. Reducing the Burden of Cancer In North Carolina: A Data and Resource Guide for Communities to Fight Cancer, November, heburdenofcancerresourceguide.pdf 4. UCRF 2017 Annual Report eceived/university%20cancer%20research%20fund%20report.pdf 5. NC Cancer Hospital Cancer Registry 6. US Census Data 7. CDC Center for Health Statistics; 8. African American Outreach Guide, (2008) 9. NC SCHS Vital Statistics; NC Policy Watch Minority Health and Health Disparities Research and Education Act; US Public Law (2000), p NC Justice Center, America s Health Rankings Annual Report, NC Program on Health Literacy Cancer Treatment & Survivorship Facts & Figures, American Cancer Society, ; treatment-and-survivorship-facts-and-figures/cancer-treatment-and-survivorship-facts-and-figures pdf 16. Tobacco in NC Fact Sheet, HPV Cancer & Prevention Profile, North Carolina The State of Obesity: Better Policies for a Healthier American, August Smith, K.S., Nicolla, J, Zafar, S.Y.; Bridging the gap between financial distress and available resources for patients with cancer: a qualitative study (2014). 20. Spencer, J.C., Samuel, C.A., Rosenstein, D.L. et al. Oncology navigators perceptions of cancer-related financial burden and financial assistance resources (2017) UNC Lineberger Comprehensive Cancer Support Program Get real and HEEL Cancer Program Standards: Ensuring Patient-Centered Care, N.C. Rural Center, N.C. Health Atlas UNC EPIC Data,