October 2015 Vol 6, NO 5
← Back to Issue
Identifying Barriers to Navigation Needs of Cancer Survivors in Rural Areas
Pam Baker DeGuzman, PhD, MBA, RN; Christina Sheffield, BS; Lindsay R. Hauser, MS; Jessica Sherman, MSN, RN; Jessica Keim-Malpass, PhD, MS, RN
Background: It is well known that patients with cancer who reside in rural areas have challenges accessing comprehensive survivorship care because of geographic and financial constraints. Providers of cancer care are responsible for developing survivorship care plans. However, the effectiveness of survivorship plans is limited by process challenges at the health-system level, and their effectiveness in rural areas has not been determined. Barriers to navigating survivorship care for rural populations may be compounded by the difficulty experienced by providers and staff of cancer centers when transitioning patients to survivorship resources in distant and unfamiliar home communities of survivors.
Objective: The purpose of this study was to identify a multistakeholder, health-system perspective on the barriers to navigation needs of cancer survivors in rural settings.
Methods: Using an exploratory qualitative design, we interviewed 42 healthcare providers, support staff, and administrators at a rural academic medical center in Central Virginia. Data were analyzed by thematic analysis.
Results: Three major themes emerged from the analysis, including (1) ineffective transition back to primary care, (2) concern regarding the financial burden for patients, and (3) inadequate coordination of support care services throughout the cancer continuum. Gaps in survivorship care may be linked to providers’ attempts to consolidate care to reduce patients’ financial burden, which may lead to deprioritization of supportive care services during the treatment and survivorship phases of care.
Conclusions: Oncology survivorship care clinics should be evaluated for rural populations. Using telemedicine to reach patients in rural settings, as part of the comprehensive survivorship care plan, may improve access to care and health outcomes for this population.
It is well documented that patients with cancer who live in rural settings often experience challenges accessing comprehensive survivorship care because of geographic and financial constraints. Many studies have demonstrated broad disparities in outcomes between rural and urban cancer survivors, including poorer quality of life, more symptoms, and higher levels of anxiety, depression, and other emotional difficulties for those in rural areas.1-5 In the United States, poverty is a compounding factor that contributes to worse health outcomes for cancer survivors in rural settings. Cancer survivors in rural settings are more likely than their urban counterparts to be indigent and using Medicaid.6 They also have poorer health and higher physical distress, largely attributable to their lower socioeconomic status.7
Survivorship care plans (SCPs) have the potential to address deficiencies in patient navigation during the survivorship phase of care, and there is broad agreement that these programs can be used to help connect survivors with posttreatment medical and psychosocial resources. Patient navigation is the “individualized assistance offered to patients, families, and caregivers to help overcome healthcare system barriers and facilitate timely access to quality medical and psychosocial care. Cancer patient navigation works with a patient from prediagnosis through all phases of the cancer experience.”8
In 2006, the Institute of Medicine published their report, From Cancer Patient to Cancer Survivor: Lost in Transition, in which SCPs are described as a clearly explained posttreatment comprehensive summary of care provided, with a follow-up plan for cancer surveillance, cancer prevention, and psychosocial services.9 Following this, the American College of Surgeons began to require SCPs for their accredited institutions.10 However, despite the endorsement of SCPs by these groups, effective delivery of survivorship care using this method has not yet been demonstrated. Research indicates that considerable barriers to effective survivorship care planning exist, which largely result from provider implementation issues related to insufficient time and resources required to develop these complex and individualized documents.11,12
Whether SCPs ultimately remain the standard delivery mechanism for survivorship care, processes for effective delivery of these plans must be identified. Studies showing provider-side barriers to implementing survivorship care emphasize the need for oncology clinical leaders to evaluate and determine mechanisms to overcome these barriers.13,14 Moreover, cancer survivors in rural communities may experience poorer survivorship outcomes than those in urban areas because of the challenges providers face when transitioning care back to distant and unfamiliar communities.12
Despite the multifaceted complexity of navigating survivorship care for survivors in rural settings, barriers to provision of survivorship care for patients in rural communities have not been studied sufficiently.7 The limited research indicates that barriers occur during the handoff of care between the current providers, who may be less likely to provide follow-up instructions to rural-residing patients,7 and the recipient providers who may feel inadequately prepared to provide the follow-up care.12
This gap between provision of treatment and survivorship care for survivors in rural communities is likely wider than for other survivors, because of geographic challenges; greater distance further complicates the structure and process barriers of cancer care provider systems. The purpose of this study was to examine a multistakeholder health-system perspective on the barriers to navigation needs of cancer survivors in rural settings.
Design, Sampling, and Recruitment
Data were collected at an academic National Cancer Institute (NCI)-designated cancer center in central Virginia (Emily Couric Clinical Cancer Center, Charlottesville) whose catchment area includes a large rural, low-income population. This present study is part of a larger study in which all phases of the cancer continuum patient navigation process are being evaluated. We used a multistakeholder, exploratory, qualitative design, and interviewed stakeholders involved in the patient navigation process.
Purposive sampling at the cancer center level was used to identify staff and providers, both groups from within the cancer center who also interfaced with patients with cancer in the community. They were grouped into 3 general categories: (1) medical care providers, which included physicians, registered nurses, and nurse practitioners; (2) support care providers, which comprised nutritionists, chaplains, licensed practical nurses, phlebotomists, and social workers; and (3) administrators, which included nurse managers, managers, administrators, public health officials, and financial personnel.
We e-mailed each individual, requesting participation. Primary care providers from all practices affiliated with the cancer center and local health department directors received a similar recruitment notice, requesting participation in one-on-one interviews. All personnel who responded favorably were enrolled in the study and participated in the interviews (N = 42). This study received approval from the Institutional Review Board for Health Sciences Research at the University of Virginia.
Cancer center staff, providers, administrators, and external care stakeholders were interviewed individually, using a semistructured interview guide, developed by the expertise of educators at our cancer center. Interview questions are listed in Table 1. Interview questions focused on staff, provider, and administrator perceptions of specific strengths and weaknesses of the internal operations of the cancer center and the community; the cancer center’s ability to engage the community in cancer care; and perceptions of the cancer center and the community with regard to cancer care. A major area of focus was gaps in knowledge or barriers surrounding the survivorship care process, and potential sources of these barriers. We were especially concerned with gaps that may prevent patients from successfully transitioning to the prolonged survivorship phase of their care with adequate resources and support. At the time of the study, SCPs had not been introduced in the cancer center; hence, there were no questions about this particular topic.
All interviews and focus groups were transcribed verbatim and entered into Dedoose, a web application for managing, analyzing, and presenting qualitative and mixed-method research data (SocioCultural Research Consultants, LLC; Los Angeles, CA; www.dedoose.com). Data were analyzed using an exploratory qualitative descriptive approach.15 Several members of the research team coded the interview transcripts independently, naming or labeling the key features of each interview. When patterns and relationships were discovered, the initial codes were categorized to attain a higher level of abstraction and thematic analysis.
The research team engaged in interactive, iterative discussions to achieve consensus on the final salient themes that pertain to the research question and serve as the findings of this study. Trustworthiness and bias control were addressed by having the study design reviewed by members of the research team and by allowing open peer review of decisions made regarding thematic content.16
Overall, 42 healthcare providers and staff were interviewed. Three major themes emerged from the analysis of the responses. These included (1) ineffective transition back to primary care, (2) concern regarding the financial burden for patients, and (3) inadequate coordination of support care services throughout the cancer continuum. Each theme is presented in Table 2, along with exemplars.
Ineffective Transition Back to Primary Care
Efforts made by care providers to transition patients back to their primary care provider were inconsistent. The 42 medical care providers and administrators reported strong relationships that patients developed with the oncologist, and some acknowledged the need to build stronger ties with primary care providers. One administrator spoke of oncologists who preferred to keep patients in their care even when treatment had concluded. Some medical care providers transitioned their patients back to primary care but lacked follow-up, making it difficult to determine how successfully the patients had navigated their survivorship trajectories.
Concern for Patients’ Excessive Financial Burden
Administrators, medical care providers, and support care providers all were very aware of the long distances traveled by patients from rural areas to their care, and spoke of the difficulty they perceived that patients had in financing their travel, particularly for poor patients. Participants noted that the financial burdens of many patients in rural areas led them to sacrifice purchases that otherwise would have been paid with disposable income. As a result of these perceptions, providers described their attempts to reduce patients’ gasoline expenses by consolidating care into a single day, or to eliminate 1 night of accommodation costs by postponing care that mandated an overnight stay until a free room became available in a hospitality house.
Inadequate Coordination of Support Care Services
Many support care providers expressed frustration with the inability to provide comprehensive care to their patients. Throughout the continuum of care, these providers reported being excluded from patient care, including the survivorship phase. Support care providers were not included in necessary appointments during treatment and had to insert themselves into the patient care cycle, either by telephone or, unexpectedly, when encountering patients during return appointments with medical care providers. Support care providers reported the perception that although their care was provided in a fragmented unplanned manner, requests for medical service appointments were accommodated and prioritized.
Our results confirm that the transition back to primary care for cancer survivors can be problematic. These concerns echo those of earlier researchers who have investigated the transition back to primary care for patients from rural areas.7,12 Our findings reflect cancer caregivers’ perceptions that patients prefer survivorship care with their oncologist, and that the oncologist’s communication with primary care providers about cancer care requires strengthening to optimize survivorship care.
Our findings also suggest that long distances between the treatment site and the patient’s home have an impact on the ability of cancer care providers to effectively provide comprehensive care to cancer survivors in rural settings. In our study, providers and administrators frequently mentioned purposeful consolidation of care to save time and money for patients in rural areas. However, as our support care providers suggest, medical care is prioritized during consolidated visits, and appointments for support care providers are often not accommodated. Such consolidation appears to occur throughout the continuum of care, and, therefore, the most vulnerable of our patients—the rural poor—may be missing visits with those who can help them with their nonmedical issues that occur during treatment and survivorship.
Missing nonmedical specialists during the active-treatment phase of cancer care may not have as great an impact as missing this care once treatment has been completed. Cancer survivorship has been described as having 3 distinct phases; these include the acute survival phase, encompassing diagnosis and treatment; the extended survival phase, beginning when treatment ends and the patient returns to the “healthy world”; and the permanent survival phase, occurring when the likelihood of cancer remission is deemed highly likely, when there has been no evidence of disease for several years since treatment.17 The extended phase is characterized by the need for nonmedical treatment, as described in the NCI definition of survivorship, which includes “the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases.”18
Survivorship Clinics for Cancer Survivors in Rural Areas
Previous research has suggested that survivorship clinics can provide improved access to survivorship care.19-21 Oncology practice–based integrated survivorship clinics led by nurse practitioners may be the best and easiest option to transition to for patients in rural settings.22 Oncology-certified nurse practitioners can help smooth the transition for these patients because they have information about the patients’ history and can focus on the holistic care needs by initiating new referrals for nonmedical care,22 which may be required if patients had been unable to access these care providers during treatment as a result of medical appointment consolidation.
An optimal design for survivorship clinics for survivors in rural areas includes telemedicine videoconferencing. Telemedicine options have been shown to be acceptable and feasible for cancer survivors in rural settings23-26; however, most research in survivorship clinics has included follow-up by telephone rather than by videoconferencing. Videoconferencing has been shown to improve outcomes in palliative care for patients in rural settings,26 and has been evaluated for use in rural populations for cancer education, support groups, and consultative services.23 Its use in rural cancer survivorship care using an integrated, practice-based, nurse practitioner model must be evaluated to determine whether it can improve survivorship care in this setting.
Although the study had 42 participants, this number is sufficient for a qualitative descriptive approach with 3 groups.27 This study was conducted using a qualitative design, so the results are not generalizable. However, these results may be transferrable to other academic cancer centers that serve a rural patient population.
To our knowledge, this is the first study to suggest that gaps in survivorship care may be associated with providers’ attempts to consolidate care to minimize travel and expenses for patients. We found that this consolidation may be linked to prioritization of medical services and a consequent deprioritization of supportive care services. Coupled with a system that struggles to integrate survivorship care into the overall system of cancer care delivery, this well-intentioned oversight may be partly responsible for the lack of comprehensive services and survivorship care that cancer survivors experience in rural settings. If patients are not routinely able to schedule time with nonmedical providers during their treatment, the likelihood of having these services continue into the extended survivorship phase of care may be reduced. Oncology practice–based survivorship care clinics should be evaluated for rural populations specifically. Using telemedicine to reach this population for comprehensive survivorship care may improve access to care and health outcomes.
Author Disclosure Statement
Dr DeGuzman is a consultant to Virginia Cancer Network. Ms Sheffield, Ms Hauser, Ms Sherman, and Dr Keim-Malpass have no conflicts of interest to report.
1. Andrykowski MA, Burris JL. Use of formal and informal mental health resources by cancer survivors: differences between rural and nonrural survivors and a preliminary test of the theory of planned behavior. Psychooncology. 2010;19:1148-1155.
2. Andrykowski MA, Steffens RF, Bush HM, Tucker TC. Disparities in mental health outcomes among lung cancer survivors associated with ruralness of residence. Psychooncology. 2014;23:428-436.
3. Miller R. Implementing a survivorship care plan for patients with breast cancer. Clin J Oncol Nurs. 2008;12:479-487.
4. Reid-Arndt SA, Cox CR. Does rurality affect quality of life following treatment for breast cancer? J Rural Health. 2010;26:402-405.
5. Bettencourt BA, Schlegel RJ, Talley AE, Molix LA. The breast cancer experience of rural women: a literature review. Psychooncology. 2007;16: 875-887.
6. Wenzel J, Jones RA, Klimmek R, et al. Cancer support and resource needs among African American older adults. Clin J Oncol Nurs. 2012;16:372-377.
7. Schootman M, Homan S, Weaver KE, et al. The health and welfare of rural and urban cancer survivors in Missouri. Prev Chronic Dis. 2013;10:E152.
8. C-Change. Cancer Patient Navigation Overview. www.cancerpatientnavigation.org. Accessed July 8, 2015.
9. Institute of Medicine. Hewitt M, Greenfield S, Stoval E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2005.
10. American College of Surgeons Commission on Cancer. Cancer program standards 2012, version 1.2.2: ensuring patient-centered care. www.facs.org/~/media/files/quality%20programs/cancer/coc/programstandards2012.ashx. Published January 21, 2014. Accessed July 8, 2015.
11. Birken SA, Deal AM, Mayer DK, Weiner BJ. Determinants of survivorship care plan use in US cancer programs. J Cancer Educ. 2014;29:720-727.
12. Dulko D, Pace CM, Dittus KL, et al. Barriers and facilitators to implementing cancer survivorship care plans. Oncol Nurs Forum. 2013;40:575-580.
13. Mayer DK, Gerstel A, Leak AN, Smith SK. Patient and provider preferences for survivorship care plans. J Oncol Pract. 2012;8:e80-e86.
14. Stricker CT, Jacobs LA, Risendal B, et al. Survivorship care planning after the Institute of Medicine recommendations: how are we faring? J Cancer Surviv. 2011;5:358-370.
15. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277-1288.
16. Cohen MZ, Kahn DL, Steeves RH. Hermeneutic Phenomenological Research: A Practical Guide for Nurse Researchers. Vol 2. Thousand Oaks, CA: Sage Publications; 2000.
17. Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985;313:270-273.
18. National Cancer Institute. NCI dictionary of cancer terms. www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=445089. Accessed June 22, 2015.
19. Gilbert SM, Dunn RL, Wittmann D, et al. Quality of life and satisfaction among prostate cancer patients followed in a dedicated survivorship clinic. Cancer. 2015;121:1484-1491.
20. Jones BL. Promoting healthy development among survivors of adolescent cancer. Fam Community Health. 2008;31(suppl 1):S61-S70.
21. Ford JS, Chou JF, Sklar CA. Attendance at a survivorship clinic: impact on knowledge and psychosocial adjustment. J Cancer Surviv. 2013;7:535-543.
22. McCabe MS, Baker SK, Huffman C, Miller K. Optimizing survivorship care: academic and community clinic models. In: Feuerstein M, Ganz PA, eds. Health Services for Cancer Survivors. New York, NY: Springer + Business Media; 2011:223-238.
23. Doorenbos AZ, Demiris G, Towle C, et al. Developing the native people for cancer control telehealth network. Telemed J E Health. 2011;17:30-34.
24. Hegel MT, Lyons KD, Hull JG, et al. Feasibility study of a randomized controlled trial of a telephone-delivered problem-solving-occupational therapy intervention to reduce participation restrictions in rural breast cancer survivors undergoing chemotherapy. Psychooncology. 2011;20:1092-1101.
25. Garrett K, Okuyama S, Jones W, et al. Bridging the transition from cancer patient to survivor: pilot study results of the Cancer Survivor Telephone Education and Personal Support (C-STEPS) program. Patient Educ Couns. 2013;92:266-272.
26. Watanabe SM, Fairchild A, Pituskin E, Borgersen P, Hanson J, Fassbender K. Improving access to specialist multidisciplinary palliative care consultation for rural cancer patients by videoconferencing: report of a pilot project. Support Care Cancer. 2013;21:1201-1207.
27. Sandelowski M. Sample size in qualitative research. Res Nurs Health. 1995;18:179-183.
Background: Breast cancer survivors’ understanding of treatment and future health risks is needed to gain insight into unmet survivorship needs in this population. Objectives: To assess breast cancer survivors’ recall [ Read More ]
Commentary - October 1, 2015
For many years—decades, really—I have been receiving various peer-reviewed publications from the professional organizations of which I am a member. Over the years, I have come across peer-reviewed articles in [ Read More ]