Cancer is the leading cause of death in North Carolina. This issue of the NCMJ discusses cancer prevention, screening, treatment, and survivorship; disparities in incidence and mortality; and ethics of clinical trials. Highlighting the importance of comprehensive data for understanding cancer, original articles in this issue address how medical homes can reduce health care utilization among breast cancer patients and how distance to care affects receipt of radiation therapy.
Cancer Care Research in North Carolina: The State of the State
Cancer is an important public health problem in North Carolina. Articles in this issue of the NCMJ discuss ways of managing the problem and report on important cancer-related concerns facing the state’s patients, caregivers, providers, and policy makers. The authors of these articles point out areas that warrant additional clinical resources, innovative reimbursement models, and research; they also highlight the rich cancer research activities in North Carolina and elucidate today’s most salient oncology issues.
The State of the State, by the Numbers
More people in North Carolina die of cancer than of any other disease . There were an estimated 56,164 cases of cancer in the state in 2013, which represents an increase in incidence of nearly 7% since 2007 . Five types of cancer account for the vast majority of cases and cancer-related deaths in North Carolina: female breast cancer, cervical cancer, colorectal cancer, cancer of the lung or bronchus, and prostate cancer. Effectively implemented screening and prevention activities can reduce the burden of disease for all 5 of these types of cancers.
Cancer incidence and mortality vary substantially across the state. Figure 1 shows the age-adjusted average annual mortality rate from cancer of all types in North Carolina. According to data from the North Carolina Central Cancer Registry, the average annual age-adjusted mortality rate for the period 2003 through 2010 was as high as 243 cancer deaths per 100,000 population in some counties and as low as 148 deaths per 100,000 population in other counties (written communication from Anne-Marie Meyer, PhD, facilities director of the Integrated Cancer Information and Surveillance System; May 12, 2014). North Carolina’s average mortality rate of 178 cancer deaths per 100,000 population is slightly higher than the US average of 173 deaths per 100,000 population .
Counties in North Carolina with the highest cancer mortality rates frequently have the highest poverty rates, as well; in many of these counties, more than 20% of the population lives in households with incomes below the federal poverty guidelines . The commentary in this issue by Lea and King  discusses how regional poverty, lack of education, and other social determinants of health can lead to disparities in cancer mortality. Lea and King note that for the years 2006 through 2010, a 29-county region in Eastern North Carolina—which contains 15% of the state’s population—had a substantially higher cancer mortality rate than did the state’s other 71 counties. They also observe that African American patients in this 29-county area had a higher mortality rate than whites. Addressing these disparities must be a priority in the state, both for payers and for health systems. Research is needed to identify key barriers to the delivery of high-quality care in this region and to test and implement strategies—including novel and broader models of insurance coverage—that could narrow these disparities .
North Carolina’s average annual cancer incidence rate for the years 2006 through 2010 was 471 new cases per 100,000 population, which was slightly higher than the US average of 454 cases per 100,000 . Again, variations between counties were apparent, with annual incidence rates during that period ranging from 554 new cases per 100,000 population in Lenoir county to 386 new cases per 100,000 population in Bladen county . Myriad factors likely contribute to differences in incidence rates across settings, including demographic characteristics of residents, health behaviors (eg, smoking, level of physical activity, consumption of vegetables and fruits), environmental exposures, genetic risk factors, and screening and prevention activities.
Two of the most commonly occurring types of cancer in the state are female breast cancer and cancer of the lung or bronchus. Average annual age-adjusted breast cancer mortality rates for the years 2003 through 2010 ranged from 13 to 39 deaths per 100,000 population, with the highest rates found in counties in the eastern and far western parts of the state (see Figure 2). Based on data through 2009, the statewide average rate of mortality from breast cancer was 21.4 deaths per 100,000 population, which was similar to the national average of 22.2 deaths per 100,000 .
For cancer of the lung or bronchus, North Carolina’s average rate of mortality was 54.6 deaths per 100,000 population, based on data through 2009, which was higher than the national average of 48.5 deaths per 100,000 . However, age-adjusted rates of mortality from cancer of the lung or bronchus vary widely across North Carolina counties, ranging from 39 deaths per 100,000 population to 81 deaths per 100,000 population (see Figure 3; online version only). Historically, the highest rates of death from cancer of the lung or bronchus have occurred in Scotland, Hoke, Caldwell, Swain, Jones, Lenoir, Granville, Gates, Currituck, and Rockingham counties . In 8 of those 10 counties (all except Hoke and Lenoir), more than 20% of the adult residents were current smokers in 2010 .
Gynecologic cancers affect many women in the state, particularly those in underserved populations. Incidence and mortality trends for gynecologic cancers in North Carolina are described in this issue’s Running the Numbers column by Radhakrishnan and Rao . The significant morbidity and mortality from gynecologic cancers emphasize the need to prioritize screening and prevention programs for cervical cancer, to develop referral networks and adequate insurance coverage, and to support patients who are diagnosed with cervical and other gynecologic cancers. Although rates of cervical cancer have decreased over time , the women who are still being afflicted by these cancers tend to be those who are most underserved. Cervical cancer could be largely eradicated through human papillomavirus (HPV) vaccination and screening during primary care visits, but substantial commitment will likely be required to ensure that the women who are most at risk for developing and dying from this disease have access to timely, effective, and affordable care.
Access to Care
Access to oncology care is problematic for many cancer patients in North Carolina, and lack of access to specialty care is a perennial concern, particularly for poor and rural patients. Development of referral networks and education of local providers about when referral is merited will improve quality of care in the state and reduce barriers to care. One such barrier is identified in an original article by S.B.W. and colleagues , which found that women who lived further from a radiation oncologist had lower rates of receiving recommended radiation therapy. This study suggests that supporting patients by offering transportation assistance or accommodations near treatment facilities may yield higher rates of compliance with therapies that are provided far from the patient’s home.
Cancer Screening and Prevention
With regard to receipt of cancer screening, North Carolina residents are doing quite well. A 2013 report indicated that the state’s rates of screening for cervical, colorectal, and prostate cancer are higher than corresponding national rates, and the state’s rate of screening for breast cancer is similar to the national average . Unfortunately, the state is doing worse than the nation as a whole on certain metrics of cancer prevention, including fruit and vegetable consumption, time spent engaging in moderate or vigorous physical activity, and healthy body mass index (BMI) . Relating to the promotion of cancer prevention behaviors, the commentary by Leeman and colleagues  describes methods for disseminating and implementing evidence-based interventions. This commentary focuses on tobacco control as a case example, underlining the continued prevalence of smoking in the state and discussing the need for providers to use knowledge about cessation strategies in their practices.
Current controversies in cancer screening and the potential value of decision-making tools are described in the commentary by Miller and Reuland . An ongoing challenge faced by health care providers and patients is how to have meaningful discussions about complicated and controversial issues in the brief time allotted for a clinical visit. Use of tools such as online videos that patients can watch in waiting rooms or counseling by nonclinical personnel might provide patients with the information they need without overtaxing office visits. A broader problem is that some clinicians and researchers have begun to question the value of certain types of screening. Screening for colon cancer and cervical cancer are still widely believed to be beneficial, but the benefits, costs, and potential harms of screening for lung, prostate, and breast cancer have recently been the focus of national debates .
For example, although lung cancer screening with computed tomography scans may be beneficial in high-risk smokers, the cost effectiveness of a national screening program to detect lung cancer is unclear. Resources may be better used to prevent smoking and to encourage quitting [10-13]. Similarly, prostate cancer screening using the prostate-specific antigen (PSA) test may have a very small benefit in men younger than 70 years, but it can also lead to adverse outcomes, such as unnecessary procedures. In older men, PSA testing is generally not beneficial, as it causes more harm than good. The US Preventive Services Task Force (USPSTF) concluded that harms can outweigh benefits for the average man, and the USPSTF now recommends against PSA testing .
Concerns have also been raised about breast cancer screening because of the results of the Canadian National Breast Screening Study, which found that mammography had no effect on mortality from breast cancer but did result in 1 overdiagnosed breast cancer for every 424 women screened . Overall, however, the evidence and guidelines continue to support the use of mammography [16, 17]. These seemingly conflicting messages from various evidence-generating bodies understandably confuse and exasperate patients. Effective communication of evidence to lay audiences as well as clinical professionals is therefore critically important.
Racial disparities continue to plague North Carolinians. Compared with whites, African Americans in the state have higher incidence rates of the 5 main types of cancer and higher rates of mortality from those cancers . In terms of cancer prevention, African Americans engage in physical activity less often than whites and have a higher average BMI; on the other hand, African Americans have lower rates of smoking among high school students and are more likely to undergo screening for breast and cervical cancer . These data indicate significant room for improvement in cancer prevention, cancer detection, and receipt of effective and timely treatment among racial minorities in the state.
Effects of Cancer on Physical Health, Mental Health, and Financial Status
The physical and mental health issues faced by North Carolina’s cancer survivors are described in the commentaries by Naughton and Weaver  and Park and Rosenstein . People with cancer face substantial burdens from symptoms, functional impairments related to their disease, and adverse sequelae of treatments. Even those who are cured or who experience prolonged survival with cancer often suffer substantial decrements in their quality of life, which has widespread ramifications in terms of their psychosocial well-being and their ability to conduct daily activities and to participate in the workforce. The articles in this issue highlight the importance of understanding cancer survivors’ needs and developing programs that help survivors manage symptoms or provide support for survivors who are experiencing functional impairments or mental health problems. Use of dedicated patient navigators who have backgrounds in social work and/or nursing has been shown to improve symptom management, reduce use of emergency services, and improve quality of life [20-22]. Access to mental health services and support groups can also have positive effects on the patient experience and on the patient’s ability to participate in activities and work [23-25]. The use of screening tools to identify patients who need supportive care should thus be integrated into care.
Programs to improve coordination of care between cancer care specialists and primary care providers are necessary and may help to improve outcomes and reduce costs. For example, in the original article by Goyal and colleagues , the authors explore the role of patient-centered medical homes in potentially reducing health care utilization associated with chemotherapy-related adverse events among breast cancer patients. Their study found that Medicaid patients had significantly fewer inpatient admissions associated with chemotherapy-related adverse events if they were enrolled in Community Care of North Carolina (CCNC), which uses a medical-home model to provide care, than if they were not enrolled in CCNC. In the future, it is advisable to focus on developing resources such as patient-centered medical homes in a cost-effective manner, and there should be an emphasis on research that can measure their impact on quality of care.
Complementing these papers, the commentary by Dusetzina and colleagues  describes current issues regarding the cost of cancer care. As has been widely reported in the media, costs of cancer care are increasing for the system overall, as well as for individual patients (through higher out-of-pocket expenses). The commentary by Dusetzina and colleagues focuses specifically on drug costs, which have risen steadily. Another substantial component of health care costs is excessive treatment near the end of life, including potentially avoidable hospitalizations. Savings in this area can be facilitated by early use of palliative care services, which can yield improvements in symptoms and functioning, reduction in the number of hospitalizations, reduction in the use of toxic treatments near the end of life, improved quality of life, and decreased costs. These benefits are discussed in a commentary by Bull and Abernethy  and in a sidebar by Barfield . Palliative care is not the same as hospice care or end-of-life care. It can be initiated early in the course of treatment for advanced or metastatic cancers and is largely supportive. Palliative care should be initiated by a palliative care specialist or a consulting team. Private and public payers in North Carolina should provide reimbursement for early palliative care services, and hospital systems and practices should provide access to palliative care consultations for both inpatients and outpatients.
Special Issues in Cancer Research in North Carolina
North Carolina benefits from the presence of 3 institutions that are designated as comprehensive cancer centers by the National Cancer Institute (NCI): the UNC Lineberger Comprehensive Cancer Center at the University of North Carolina at Chapel Hill, the Duke Cancer Institute, and the Comprehensive Cancer Center of Wake Forest University. Additionally, through the NCI’s Community Clinical Oncology Program (CCOP) network, academic investigators and community physicians work together to design, conduct, and recruit patients (in particular, minority patients) to participate in important clinical trials. There are 3 active CCOPs across the state: Southeast Cancer Control Consortium CCOP, Wake Forest University CCOP, and SENC CCOP . Howie and Peppercorn discuss ways of improving clinical research in their commentary, which describes ethical standards for conducting clinical research .
As strategies are developed for improving ethical standards in research and optimizing cancer outcomes, it will be increasingly important that researchers have timely data about the prevalence of disease, treatment patterns, outcomes, and insurance coverage among cancer patients. Meyer and colleagues  describe a powerful new research tool unique to North Carolina, the Integrated Cancer Information and Surveillance System (ICISS), which links claims-based data from public and private payers with the North Carolina Central Cancer Registry and other data sources. This resource, which is supported by the state’s University Cancer Research Fund, has already enabled myriad studies of quality of care and is anticipated to accelerate understanding of care patterns and treatment effectiveness. Moreover, this initiative is well ahead of what is being done in other states, and it thus provides an example of methods and approaches that can achieve complicated linkages of disparate data sources. ICISS also exemplifies the wealth of health care research activities in North Carolina, which have the potential to inform policy and improve quality of care in and beyond the state. Notably, ICISS data were used for both of the original articles featured in this issue [7, 26].
In summary, North Carolina has outstanding research activities and resources; nevertheless, it faces persistent challenges in ensuring broad access to high-quality affordable care and in closing gaps in outcomes related to geography, race, and poverty. Going forward, this wealth of research activities and capacity will hopefully be harnessed to inform the state’s policy initiatives, reimbursement models, intervention designs, and approaches to the delivery of care.
S.B.W. is supported by an American Cancer Society Mentored Research Scholar Grant (primary investigator, Wheeler; MRSG-13-157-01-CPPB). Both S.B.W. and E.B. are indebted to the state of North Carolina’s University Cancer Research Fund for supporting their research programs.
Potential conflicts of interest. S.B.W. and E.B. have no relevant conflicts of interest.
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Stephanie B. Wheeler, PhD, MPH assistant professor, Department of Health Policy and Management, UNC Gillings School of Global Public Health, University of North Carolina at Chapel Hill; faculty member, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill; research fellow, Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill; faculty trainee in cancer disparities, UNC Center for Health Promotion and Disease Prevention, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
Ethan Basch, MD, MSc associate professor, School of Medicine, University of North Carolina at Chapel Hill; associate professor, Department of Health Policy and Management, UNC Gillings School of Global Public Health, University of North Carolina at Chapel Hill; director, Cancer Outcomes Research Program, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
Address correspondence to Dr. Stephanie B. Wheeler, Department of Health Policy and Management, UNC Gillings School of Global Public Health, University of North Carolina at Chapel Hill, 135 Dauer Dr, McGavran Greenberg Hall, CB #7411, Chapel Hill, NC 27516 (firstname.lastname@example.org).