Challenges of Rural Cancer Care in the United States

September 15, 2015

Rural cancer patients often face substantial barriers to receiving optimal treatment, including availability of cancer care providers, distance to services, lack of public transportation, financial barriers, and limited access to clinical trials. However, a number of promising approaches may address some of these challenges.

Rural cancer patients face many challenges in receiving care, including limited availability of cancer treatments and cancer support providers (oncologists, social workers, mental healthcare providers, palliative care specialists, etc), transportation barriers, financial issues, and limited access to clinical trials. Oncologists and other cancer care providers experience parallel challenges in delivering care to their rural cancer patients. Although no one approach fully addresses the many challenges of rural cancer care, a number of promising strategies and interventions have been developed that transcend the issues associated with long travel distances. These include outreach clinics, virtual tumor boards, teleoncology and other telemedicine applications, workforce recruitment and retention initiatives, and provider and patient education programs. Given the projected increase in demand for cancer care due to the aging population and increasing number of Americans with health insurance through the Affordable Care Act, expansion of these efforts and development of new approaches are critical to ensure access to high-quality care.

Introduction

One-fifth of the US population resides in rural areas, but only one-tenth of all physicians practice in rural areas.[1] Medical students and residents often opt to stay in the large cities where they received their education and training because rural towns may lack educational and cultural opportunities and sufficient population size to support a practice.[2] Specialists, in particular, tend to practice in urban areas; there are 134 specialists per 10,000 people in urban populations, but just 40 specialists per 10,000 people in rural areas.[1] As a result, rural residents have greater travel distances and transportation difficulties in reaching healthcare providers for both general and specialty care.[1,3]

A cancer diagnosis presents particularly significant issues for rural residents and providers. Depending on stage and site, cancer typically requires expensive treatments from multiple specialists, and the disease and treatment can make it difficult for patients to drive or even walk. Exacerbating these issues, rural populations are more socioeconomically disadvantaged and less educated than their urban counterparts.[1] Therefore, the purpose of this review is to provide an overview of how these issues specifically impact rural cancer patients and the providers who care for them.

Access to Healthcare Services

Availability of cancer care providers in rural areas

According to the American Society of Clinical Oncology’s (ASCO) recent workforce analysis, only 3% of medical oncologists practice in rural areas, whereas 20% of the US population resides in rural areas, and over 70% of counties in the United States do not have medical oncologists.[4] An Iowa study found that of all cancer patients diagnosed in Iowa between 2004 and 2010, 63% resided in a hospital service area (HSA) with a local oncologist, 29% resided in an HSA with a visiting oncologist, and 8% resided in an HSA with no oncologist; those in areas with no local oncologist traveled an average of 58 minutes to receive chemotherapy.[5] Impending retirements and financial pressures on small community oncology practices may exacerbate access issues in rural areas in the coming years.[6]

The availability of radiation oncologists and radiation facilities is also of concern. There are many areas across the United States where residents have to travel great distances to receive radiotherapy.[7] Another Iowa study found that the mean travel time to radiotherapy services was 26 minutes, but patients residing in small and isolated rural towns traveled nearly three times longer than urban residents to receive radiotherapy.[8]Furthermore, a 2003 survey of radiation oncologists found that only 16% practiced in non-metropolitan areas.[9]

Rural residents experience comorbid chronic illnesses at least as frequently, if not more frequently, than their urban counterparts.[10] Since rural residents have limited access to specialists, and primary care providers may be uncomfortable managing patients undergoing active cancer treatment, rural oncologists are often in the position of having to manage their patients’ comorbidities in addition to the cancer itself.[11]

The psychosocial needs of cancer patients are also of critical importance. Unfortunately, the availability of social workers and mental healthcare providers who can assist cancer patients with these important issues is lacking in rural areas compared with urban areas. Only 2% of health social workers practice in rural areas, and specialized oncology social workers are essentially nonexistent in rural towns.[12] Rural physicians report greater difficulties obtaining mental health services for their patients compared with urban physicians, and confirm supply problems as the reason.[13] This can be extremely problematic considering that poverty, mental illness, and other psychosocial problems are prevalent in many rural counties throughout the country.[14] One study found that rural cancer survivors experience poorer mental health functioning, as well as greater symptoms of anxiety, depression, distress, and emotional problems compared with urban cancer survivors.[15]

Beyond the psychosocial needs that often go unaddressed in rural areas, a survey of rural cancer patients found that 23% reported an unmet cancer information need. Most of these patients also reported insufficient cancer discussion time with their physician and expressed the need for more information after consulting their physician.[16,17]

Transportation issues

According to a 2008 study by Onega et al, those living in large rural towns must travel a median of 51 minutes to get to any specialized oncology care, and those in small or isolated towns travel 59 minutes. In order to reach the nearest academic-based care, they must travel a median of 83 and 97 minutes, respectively.[18] Given the high poverty levels in many rural areas, some patients face financial barriers to transportation, including not having enough money for gas or even a car. A report from the US Department of Agriculture indicated that over 1.6 million rural households do not have cars, with the highest proportion of “carlessness” in the South, Appalachia, the Southwest, and Alaska.[19]

Rural residents without cars are highly dependent on public transportation, yet less than 10% of federal funding for public transportation goes to rural areas.[19] Public transportation is only available in 60% of rural counties.[19] Of the counties with public transportation, approximately one-quarter offer only limited services and two-thirds operate in single counties or only have city/town routes.[19] Rural cancer patients who are not able to drive a car, lack social support to assist with transportation, and/or lack access to social work services may simply be unable to receive cancer treatment.

Financial access (insurance and out-of-pocket costs)

Historically, rural areas have lower proportions of residents covered by employer-sponsored health insurance compared with those living in urban areas (51% vs 57% in patients < 65 years of age).[20] Among patients younger than 65, Medicaid, the State Children’s Health Insurance Program, and other public programs insure 25% of people living in rural areas, compared with 19% in other areas.[20] Prior to the June 2012 Supreme Court ruling on the Affordable Care Act (ACA) that made Medicaid expansion optional for states, approximately 75% of the rural uninsured population would have been eligible for Medicaid coverage or premium tax credits to purchase private health insurance through the Health Insurance Marketplaces. However, nearly two-thirds of the rural uninsured live in states that are not expanding Medicaid at this time. This has left a coverage gap for those who have incomes below 100% of the poverty level, making them ineligible for tax credits, but above their state Medicaid eligibility levels. A higher proportion of rural individuals fall into this coverage gap compared with urban individuals.[20]

Following a cancer diagnosis, individuals with employer-sponsored health coverage have some protection under the Family and Medical Leave Act, which provides up to 12 work-weeks of unpaid leave per year and requires group health benefits to be maintained during the leave.[21] Some employers also have leave transfer programs and offer other benefits to help employees retain their employment and health insurance through the difficult process of cancer treatment and recovery.[22] But those who are self-employed or work for small businesses may face substantial challenges in taking time off and in paying the full cost of individual insurance premiums and out-of-pocket cost-sharing expenses while they are not working due to treatment. With the decline in manufacturing jobs over the past 30 years, many rural economies are based heavily on self-employment and small businesses.[23]

The fact that the proportion of services covered by Medicaid and Medicare is higher in rural areas compared with private health insurance coverage has significant implications for the reimbursement of rural providers. On average, physicians in Medicare are paid 81% of private payment, while physicians in Medicaid are paid 56% of private payment.[24] Given the payment differential and potential impacts on revenue, physicians may be less inclined to accept new Medicaid patients, thereby exacerbating access problems in rural areas.[25]

Access to clinical trials

Sateren et al found significant geographic variation in rates of accrual to clinical trials related to cancer treatment. Patients located in areas with greater numbers of cancer specialists, physicians overall, and hospitals with American College of Surgeons (ACS)–approved cancer programs, as well as higher mean incomes and employment rates, were more likely to be enrolled in clinical trials.[26] This suggests that rural populations are under-represented in these trials.

An online survey of community oncologists revealed that 42% reported issues with finding clinical trials close enough to be considered by their patients. Among those who did refer patients for clinical trials, 77% reported that less than a quarter of their referrals were to a hospital other than the one they were affiliated with or employed by. Most cited time constraints as a barrier to keeping up with all active clinical trials in their geographic area.[27]

There are also a number of other issues that may prevent rural oncology practices from actively participating in accrual for clinical trials. Evidence suggests it is essential to have dedicated research recruitment personnel in order to effectively accrue patients for clinical trials.[28] Many small rural cancer centers do not have sufficient volume to support dedicated clinical trial research nurses, often leading to poor trial accrual.

Palliative and end-of-life services

Given the previously discussed shortage of social workers in rural areas, rural cancer patients’ psychosocial needs may not be fully addressed during visits with their oncologist or surgeon. This may result in inadequate discussions about palliative and end-of-life care. In addition, rural residents have poorer geographical access to hospice, with over 6 million individuals residing in communities more than 60 minutes from a hospice facility.[29,30] Not surprisingly, rural Medicare beneficiaries are less likely than urban beneficiaries to use hospice care.[29,31] Financial challenges associated with low patient volume, medication costs, and insufficient Medicare reimbursement, along with recruitment and retention of staff, have been cited as obstacles to providing hospice services in rural areas.[32] Furthermore, the shortage and turnover of community physicians in rural areas makes the referral process and care coordination more difficult.[32]

In addition to issues related to in-home hospice services, rural patients have less access to hospice inpatient/residential facilities compared with urban patients.[33] This is problematic for patients lacking the support required for them to remain home at the end of life, even with available in-home hospice services.

Availability of high-quality palliative care is also an issue. A study involving a palliative care needs assessment of 236 rural hospitals in seven Rocky Mountain Region states found that while most hospitals provided hospice contractual services and advanced care planning activities, less than half reported having a formal palliative care program or pain service. Moreover, only 9% of employed clinicians have actually received formal palliative care training.[34]

Impact of Access Issues on Screening, Treatment, Follow-up Care, and Outcomes

Above and beyond the influence of socioeconomic and health status, the impact of rural residence on cancer screening rates, receipt of recommended treatment and follow-up, and outcomes of cancer care are unclear. Studies have shown that rural residents are less likely to receive mammography screening compared with urban residents,[35-37] but the evidence does not suggest rural patients are diagnosed with breast cancer at later stages than urban patients.[38,39] Findings related to the association between rurality, screening, and stage at diagnosis in other types of cancers (such as colorectal) are also inconsistent.[40-43]

Once in treatment, rural patients may not receive optimal regimens because of their access issues. Meilleur et al found that rural patients receive less curative radiation than urban patients for breast, endometrial, and prostate cancer,[44] and other studies have found associations between longer travel distances and lower rates of radiotherapy.[3,45-50] Given that radiation services often require prolonged treatment over many weeks, transportation and/or lodging may be a significant issue for rural patients. Similar issues exist for rural patients whose treatment regimens require daily infusions/injections. Moreover, making arrangements for concurrent chemotherapy and radiation can be challenging when these services are not available in the same town.

Access issues often persist after active treatment has ended, since rural patients may be reluctant to travel long distances to receive follow-up care from cancer specialists. Responsibility for follow-up care often falls to local primary care providers, who may lack experience in treating survivors of certain types of cancers,[51] and the majority of primary care providers rate the transfer of care from oncologists as only “fair” or “poor.”[52] Schootman et al found that 62% of rural vs 78% of urban cancer survivors in Missouri reported receiving advice about cancer follow-up care,[53] and a national survey of oncologists and primary care providers concluded that a minority reported consistently discussing and providing survivorship care plans.[54]

Encouragingly, most studies have indicated that cancer survival is not substantially worse in rural cancer patients compared with urban patients.[38,55,56] However, those treated in smaller facilities have worse survival than those treated in larger and/or teaching facilities, and rural cancer patients are more likely to receive treatment in smaller hospitals.[57,58]

Strategies to Address Challenges in Rural Cancer Care

Despite all the challenges facing rural cancer patients and their providers, several promising strategies have been developed to help transcend distance-related barriers. The following approaches have been piloted in rural areas, and advantages and disadvantages of each are discussed. We also present two Tables containing specific examples of programs that have been implemented using teleoncology and virtual tumor boards.

Outreach clinics

Many rural states have employed outreach, or visiting consulting clinics, to increase access to cancer care in rural areas. Through agreements between rural clinics and larger urban practices, specialists travel to rural sites for a certain number of days per week or month. In Iowa, these arrangements lowered the median driving time to the closest medical oncology clinic from 52 to 19 minutes,[59] and increased the rate of chemotherapy administration among patients with invasive cancers residing in rural communities from 10% to 24%.[5]

However, the frequency of oncologist visits to rural sites may not be adequate for all patients. Some only visit certain towns once or twice a month, which could lead to treatment delays. Another issue is the burden of uncompensated travel time and expenses for the providers traveling to rural locations.[60]

Teleoncology

Teleoncology, which involves the use of audiovisual conferencing technology for patients to remotely see cancer specialists, has the potential to overcome many of the physical access barriers to receiving cancer care in rural areas, and acceptance of this approach is improving with the development of better and less expensive technology.[61] In a Tennessee study, 95% of teleoncology patients who saw their oncologist in person at the rural sites for initial care and then via audiovisual conferencing for approximately half their visits reported that their teleoncology experience was as good, or better, than an in-office visit.[61] Similarly, in a study examining patient perceptions of a Kansas-based teleoncology program, all 22 participants expressed satisfaction with the service.[62] Furthermore, healthcare providers have also expressed satisfaction with teleoncology visits.[63,64]

Teleoncology is also being increasingly used to deliver cancer support services, such as psychiatric, nutritional, and palliative care.[65] The Indiana Cancer Pain and Depression randomized trial found that telephone-based care management and automated symptom monitoring improved pain and depression symptom scores over usual care.[66] Programs that deliver hospice care via video conferencing have reported high patient, nurse, and social worker satisfaction, being especially useful for after-hours consultations as well as determining whether an at-home visit is needed.[67,68]

However, some financial and logistical issues remain. Although the Centers for Medicare and Medicaid Services (CMS) have reimbursed for telemedicine services since 1998, these reimbursements have been limited, especially by the restriction that the Medicare beneficiary be located in a rural Health Professional Shortage Area or county outside of a metropolitan statistical area.[65,69] However, as more studies are published showing that telemedicine visits preserve patient safety and are otherwise equivalent to an in-person visit, CMS is beginning to loosen restrictions on reimbursement.[61,65] Furthermore, 42 states require telemedicine to be covered in their Medicaid program, while 17 states also require telemedicine be covered by private insurance.[65] Yet no two states are reimbursing at the same rate for the same services, and each state has different legislation and restrictions on coverage; this variation in telemedicine policy has numerous implications for implementation and uptake of telemedicine services.[70]

As technology has improved and become more widely available, telemedicine program costs have significantly decreased. For instance, the costs of the Kansas-based teleoncology program have been reduced from $812 per visit in 1995 to $251 in 2005, and are now less than the cost of an in-person clinic visit.[68,71] It was also reported that this program became financially viable once more than 200 patients per year were seen.[61] A Tennessee-based study showed that for providers to break even, the teleoncology program needed to save them at least 5 hours of travel time per month.[61]

Although teleoncology can be a tool to overcome barriers to receiving oncologic care in rural areas, there are issues with coordination and availability of providers. The Kansas-based program uses nurses to assist the distant cancer specialist with examining the patient, including use of an electronic stethoscope and other devices to visualize the ear, nose, and throat.[72] They report that patients quickly become comfortable with the oncology nurses,[72] although some patients have expressed concerns regarding nurses conducting parts of the exam for the distant physician, and communication being hampered by not being able to see the physician in person.[62]

Ideally, medical care will also be readily available should complications arise, though not necessarily delivered directly by the distant cancer specialist. For example, in the Kansas program, the patient’s primary care provider is responsible for the patient’s day-to-day management, including complications arising from chemotherapy.[73] However, it is likely that many primary care providers would not be comfortable taking on this role, especially without appropriate training and adequate consultation and support from the distant cancer specialists.

Finally, broadband internet, necessary for the use of modern-day, high-quality audiovisual conferencing, is less available in rural areas, with residents being more likely to report not having broadband access because it is not available where they live.[74] According to a recent Pew Research Center report, only 60% of rural residents use broadband, compared with 70% of urban and 73% of suburban residents.[75] However, funding from the American Recovery and Reinvestment Act of 2009 has gone toward providing broadband to households (largely rural) where it was not previously available,[74] while a parallel Federal Communications Commission infrastructure program provides funding for building broadband infrastructure across new regional networks as well as recurring broadband costs for eligible rural providers.[61] Further details, including institution location, type of services, and methods of delivery of several teleoncology programs are shown in Table 1.[62,67,68,71-73,76-80]

Virtual tumor boards

Telemedicine video conferencing technology can be used to conduct virtual multidisciplinary tumor board meetings across institutions, which could be particularly beneficial for small, rural hospitals and clinics that would otherwise not have the resources and expertise to conduct these types of meetings. Studies have addressed the feasibility of large academic medical centers conducting joint tumor board meetings with small community hospitals[81,82] and found that participants are generally satisfied with this approach.[82] In addition, academic clinicians have reported that these meetings can serve as an opportunity for clinical trial recruitment.[82]

Achieving balance between having these types of meetings frequently enough to inform treatment decisions for complex patients in need of timely care, and the time constraints of providers in the community setting, remains a challenge. In addition to the meeting time itself, community-based physicians reported spending up to 60 minutes reviewing literature and case details to feel prepared for their colleagues’ questions.[82] In addition, lack of reimbursement for participation in tumor board meetings may also deter community providers from participating.[82] Some physicians reported that they often chose other, more expedient forms of consultation (eg, telephone or email) or referred complex patients instead of investing uncompensated time to prepare and present the case to the virtual tumor board.[82] The details of several virtual tumor board programs are shown in Table 2.[81-87]

Workforce initiatives

Implementation of incentives and programs to increase the recruitment and retention of the oncology workforce in rural areas is critical to improving access to care, particularly in the coming years when the demand for oncologists is projected to substantially outpace the supply of oncologists.[6] Expansion of loan repayment programs and revision of the existing programs to focus on cancer physicians are two potential mechanisms. For example, ASCO initiated a loan repayment program for oncologists committed to practicing in rural and underserved regions of the United States.[88]

Involving primary care physicians in follow-up care for certain cancer patients could allow oncologists to focus on new diagnoses and active treatments. Grunfeld et al found no differences in recurrence, serious clinical events, or health-related quality of life between early-stage breast cancer patients randomized to follow-up with cancer specialists vs family physicians.[89] Alternatively, some cancer centers and clinics have started to employ highly trained nurse practitioners or physician assistants to provide follow-up/survivorship clinics and administer some of the less complex cancer treatments to allow oncologists to accommodate more cancer patients. Studies have shown that this approach offers comparable quality of care for cancer patients.[90-92]

Improved coordination among the various clinicians providing follow-up care could be enhanced by detailed survivorship care plans and treatment summaries now recommended by the Institute of Medicine[93] and required for ACS accreditation.[94] Primary care providers who reported receiving survivorship care plans from oncologists were nine times more likely to have survivorship discussions with those patients.[54]

Educational initiatives

Rural providers face a number of barriers to receiving continuing education, including distance to teaching hospitals that typically provide educational programs and scarcity of time that can be diverted away from patient care due to lack of coverage.[95] Telemedicine technologies can be used to deliver real-time, interactive cancer educational programming to rural providers who may otherwise lack access to such programs. These types of programs could be particularly helpful for non-cancer specialists who provide care to cancer patients living in rural areas.[95] Patient-focused educational approaches have involved the use of Web-based applications to assist cancer patients in navigating resources and programs that may be available to them,[96] and in enhancing patient empowerment.[97]

Conclusions

Rural cancer patients often face substantial barriers to receiving optimal treatment, including availability of cancer care providers, distance to services, lack of public transportation, financial barriers, and limited access to clinical trials. However, a number of promising approaches may address some of these challenges.

A limitation of this review is that we presented results from a large number of analyses that may have been based on widely varying definitions of “rural,” as well as heterogeneous methods of measuring and categorizing distance from care. However, our primary objective was to summarize the myriad issues facing rural cancer patients and their providers, as there is very little existing literature that presents a landscape of rural oncology in the United States.

Furthermore, there are likely a vast number of innovative programs designed to address the needs of rural cancer patients that are never published. The lack of evidence indicating that cancer mortality rates are substantially worse for rural residents suggests that rural cancer providers are devising and implementing approaches to overcome obstacles to care. On the other hand, studies that demonstrate worse quality of life and mental health among rural cancer survivors implies there is much room for improvement in meeting the psychosocial and survivorship needs in this population.

The ACA extended coverage to millions of people who did not previously have health insurance, removed financial barriers to recommended cancer screening services, and required that private insurers cover patient costs associated with participation in clinical trials. But despite these benefits, the actual impact of the ACA on access to cancer care for rural residents remains unclear. For example, it is possible that the increasing number of Americans with health insurance may overload some oncology practices in larger cities. This, in turn, could remove incentives for these practices to offer new outreach clinics or to consider the implementation of teleoncology initiatives for their rural patients. The effects of the ACA, coupled with the increased demand associated with the aging population, underscores the pressing need to expand and enhance the rural cancer care workforce, optimize the workload and coordination among existing cancer providers, leverage existing and emerging technologies, and continue to develop innovative, patient-centered care delivery methods for cancer patients in rural areas.

Financial Disclosure: The authors have no significant financial interest or other relationship with the manufacturers of any products or providers of any service mentioned in this article.

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