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June 2013 VOL 4, NO 3
Systematic Assessment of Cancer Patient Navigation in Appalachia
Eugene J. Lengerich, VMD, MS; BEsty Aumiller, MEd, DEd; Brenda C. Kluhsman, PhD, MSS; Marcyann Bencivenga, BA; Christopher Louis, MHA; Linda Fleisher, PhD, MPH; Electra D. Paskett, PhD; Mark B. Dignan, PhD, MPH
Background: Patient navigation (PN) has been proposed to address disparities in cancer mortality. Appalachia is largely rural with a population characterized by a high poverty rate and limited access to healthcare. The study objectives were to systematically assess ongoing cancer PN programs and the perceived needs related to PN in Appalachia so that hospitals and public health or community-based organizations could enhance cancer PN programs.
Methods: We used a qualitative study design with semistructured telephone interviews of key informants at institutions/programs with and without PN in Appalachia. Subjects were selected by nonprobability discriminative snowball sampling. We used directed content analysis to identify thematic units.
Results: Between April and October 2010, 29 key informants completed the interview, 15 (51.7%) at a site with PN and 14 (48.3%) at a site without PN. In Appalachia, PN was conducted mostly by full-time health professionals, primarily registered nurses, and personal attributes, such as knowing the community and working well with multiple parties, were important. Personal attributes were particularly important to working successfully with Appalachian residents because the Appalachian culture is one of self-reliance, family, and community. PN was occurring at hospitals and cancer centers, as well as at voluntary organizations.
Conclusions: The skills of patient navigators in Appalachia should match the responsibilities for the position; skills in community engagement and cultural sensitivity are particularly important. Lack of transportation and financial resources are substantial barriers. PN programs in Appalachia should have realistic expectations that are concordant with the needs and resources of Appalachian communities.
Encompassing 420 counties in 13 states from southern New York to northern Mississippi, Appalachia is largely rural with a population characterized by a high poverty rate, a low educational level, a high rate of uninsurance or underinsurance, and limited access to healthcare. All pose substantial barriers to cancer screening, diagnosis, and treatment and are associated with increased cancer mortality.1-4 Poverty and limited health insurance coverage reduce the ability of cancer patients to receive medical care.5,6 Low education levels are indicative of reduced basic knowledge about cancer and limited information-seeking and decision-making skills.7 Overall, rural areas have fewer healthcare professionals and cancer facilities.1,3 Rural geography means that residents may be geographically isolated, must travel a long distance and for a long time to cancer treatment and services, and lack systems of public transportation.2,4 Indeed, cancer mortality, especially from cancers of the lung, cervix, colon, and rectum, is typically higher in Appalachia than in the remainder of the United States.8-14
Patient navigation (PN) has been proposed as a method to address disparities in cancer mortality experienced by some populations.15-18 PN has been described as the one-on-one support and guidance offered to persons with an abnormal cancer screening or a new cancer diagnosis.18 The support enables patients to access the cancer care system, overcome financial and transportation barriers, and facilitate timely quality care provided in a culturally sensitive manner.19 PN targets those who are most at risk for delays in care, including racial and ethnic minorities and those from low-income populations. In 2005, the Patient Navigator, Outreach and Chronic Disease Prevention Act was enacted and the Patient Navigation Research Program (PNRP) of the National Cancer Institute (NCI) funded 9 research institutions to study the impact and cost-effectiveness of PN.19,20 The PNRP primary outcomes to evaluate PN include time to completion of diagnostic resolution, time to initiation of primary therapy, patient satisfaction, quality of life, and cost-effectiveness; secondary outcomes include time to completion of therapy, quality of care, navigator characteristics, and task and social network analysis.19
Most of the previous PN research has been limited to urban populations.21,22 Of the few PN reports in rural areas, several have focused on American Indians.21,23,24 In a study in both rural hospitals and an urban hospital in western Pennsylvania, patient navigators focused the majority of their time on patients at the urban hospital,25 with the final result of the intervention being a small, insignificant reduction in the number of days from initial referral to completion of radiation therapy treatments for patients in the navigated group.26
In addition to the limited number of published results on the impact of PN among rural populations, there is also a dearth of literature on the organizational structure, management, and administration of PN programs. While most definitions of PN described it in the one-on-one context, Vargas and colleagues viewed PN as a system, as opposed to a person, comprising primarily navigators and directors.27 While there have been reviews of individual studies on the impact of PN,21,22 we are unaware of reports in the scientific literature that compare and contrast the structure, management, and administration of various PN programs. Moreover, the extant literature on PN is scant in identifying the organizational barriers to program implementation and is limited in providing information about the evaluation of PN programs.21 Thus, organizations starting or modifying a PN program have limited guidance from the scientific literature to guide their strategy.
Despite the limited scientific literature on impact or operation, the number of and support for PN programs and patient navigators is increasing. Recently, state-based comprehensive cancer plans have included the development of PN programs, and state-based networks of patient navigators have been developed. For example, in Pennsylvania, the Pennsylvania Navigator Network uses Web-based seminars and other technology-enhanced approaches to share navigation strategies and provide navigators with continuing education.28 In addition, PN training programs have been created.29 Professional organizations, such as
the National Coalition of Oncology Nurse Navigators (NCONN), have been created to promote excellence in oncology patient care by fostering collaborative relationships and professional development among oncology nurse navigators and all healthcare disciplines locally, regionally, and nationally.30 The Commission on Cancer of the American College of Surgeons, in its 2012 Cancer Program Standards, established the Standard 3.1 for a PN Process by 2015. To be in compliance, a cancer program must have established a PN process and identified resources to address cancer patient barriers. After establishment, the PN process must be modified or enhanced each year so that it addresses additional barriers identified by a required community needs assessment.31
As a community-based research network, the Appalachia Community Cancer Network (ACCN), like its predecessors, conducts cancer intervention research that is tailored to the unique characteristics of Appalachia.3,32-36 Funded by the NCI and headquartered at the University of Kentucky, the ACCN uses a community-based approach to develop and test effective strategies to reduce the excess cancer burden in Appalachian Kentucky, New York, Ohio, Pennsylvania, Virginia, and West Virginia. Recognizing that little is known about the unique needs of PN programs and cancer patients in this area, the objectives of the current study were to systematically assess ongoing cancer PN programs and the perceived needs related to PN among cancer patients in rural Appalachia so that hospitals and public health or community-based organizations could develop or enhance cancer PN programs for rural Appalachia.
We conducted a qualitative study of PN in rural Appalachia using semistructured telephone interviews of key informants at institutions/programs (hereafter referred to as sites) with and without PN in Appalachia.37 Subjects were selected by nonprobability discriminative snowball sampling. The initial interviewees were the regional program managers at academic institutions in 5 states associated with the ACCN, who then referred us to potential interviewees at other sites with and without PN. All study methods and materials were approved by the Scientific Review Committee of the Penn State Hershey Cancer Institute and the Milton S. Hershey Medical Center Institutional Review Board. Informed consent was obtained from all subjects prior to participation in any research-related activities.
The data were collected by 2 interviewers, and no incentive was offered to the interviewees. During each interview, the interviewer followed a semistructured interview guide with questions related to actual PN (for interviewees at sites with PN) or perceived or desired PN (for interviewees at sites without PN). Broad interview question topics focused on the characteristics of the interviewee and other navigators at the site, the characteristics of the PN program, barriers and successful strategies to navigating cancer patients, and ways of establishing and running PN programs in Appalachia. We also asked interviewees at sites with PN to provide us with copies of materials related to their PN program, including needs assessments, brochures, training manuals and materials, data tracking forms and reports, and patient resource materials. Each interview lasted approximately 60 minutes and was audiotaped.
We used directed content analysis to identify thematic units from the transcripts and submitted PN material.38 Two investigators independently reviewed data from the initial 5 interviewees, identifying emerging themes from which an 8-page codebook was constructed and used to code the remaining data, with regular checks for interrater reliability. Biweekly coder meetings assured the continued development of consistent themes. The final set of categorical themes resulting from the data were (1) knowledge, awareness, and culture of patients; (2) cost, health insurance, and medication assistance for patients; (3) the impact of geography and physical environment on patients; and (4) provider and health system issues related to PN. We report data separately for interviewees at sites with PN and sites without PN.
Characteristics of Patient Navigators in Appalachia
Between April and October 2010, a total of 29 key informants representing the Appalachian area of 5 states completed the interview, 15 (51.7%) at a site with PN and 14 (48.3%) at a site without PN (Table 1). At a majority of sites with PN, health professionals, mostly registered nurses, conducted the PN, and slightly more than half (60%) of the patient navigators were employed full-time. At sites without PN, approximately 2 of 3 (64.3%) interviewees reported that patient navigators should be health professionals only, with the majority reporting a desire for registered nurses. The vast majority (78.6%) of interviewees from a site without PN reported that the patient navigator should be employed full-time.
Interviewees also reported characteristics of patient navigators (Table 1). The majority of attributes were personal, including working well with multiple parties, being compassionate, being flexible, and going above and beyond. One interviewee from a site without PN supported these personal attributes by stating, “because…they [the patient navigators] are indigenous to the community, I think there is a little more innate trust with those folks. They can have those difficult conversations and say, ‘Let’s prevent other bad things from occurring.’” In the area of knowledge, patient navigators were expected to know about the community as well as about cancer.
Characteristics of Patient Navigation Programs in Appalachia
Although interviewees reported targeting several different cancer types, more than half (51.7%) reported breast cancer as the target cancer site (Table 2). Interviewees at sites with and without PN also reported that when considering the entire continuum of cancer care, diagnosis and treatment were the primary focus areas of PN programs. All interviewees (100%) at sites with PN reported that they focused on diagnosis, compared with half (50%) of interviewees from sites without PN. Moreover, nearly half (46.7%) of interviewees from sites with PN emphasized the importance of the posttreatment phase, including survivorship and end-of-life care, while only 3 (21.4%) interviewees from sites without PN shared that view.
Barriers to Navigation of Cancer Patients in Appalachia
Barriers to PN were related to patients and to provider/health systems. Transportation was the most commonly reported barrier for cancer patients, as reported by 90% of all interviewees (Table 3). One interviewee described the transportation challenge by saying, “…500 miles round trip is the average. For people that are way, way down in the farthest little triangle of Virginia, bumping right up against Tennessee, those folks are traveling.… I think it’s like 7 hours one way.” Another interviewee discussed transportation barriers by saying, “The other major one [barrier], I would say, in this area is transportation.… We have patients coming to us from all over the place…so getting here every day for radiation for 6 weeks takes its toll.”
Income or personal finance issues were the second most commonly reported barriers. From sites with PN, 3 of 4 (75%) interviewees reported income or personal finance barriers compared with more than 4 of 10 (42.9%) at sites without PN. One interviewee described the income barriers by saying, “When you are talking about socioeconomic status, it really runs the gamut. We have got people who have been low income their whole lives, and they still are, and they have gotten this diagnosis on top of that. We have people who are employed full-time, have excellent insurance, whose lives just kind of crumble because they can’t work anymore, their insurance goes away, and they have nothing.” Similarly, interviewees reported that a lack of knowledge of cancer diagnosis and treatment was a patient barrier that persists in Appalachia. Of the 15 interviewees from sites with PN, 6 (40%) reported a lack of knowledge, whereas 5 (35%) of the 14 interviewees from sites without PN reported this same barrier. One navigator stated, “I would like to have 5 minutes with every single patient.… They [providers] cannot make a determination of who is going to need my help simply by seeing if they are insured or not insured.” Knowledge of proper use of medication and potential side effects of medication were also reported as patient barriers. In addition, patient knowledge, awareness, and cultural issues were freqently reported as patient barriers.
Barriers were not limited to patient-level issues but included provider and health system issues, such as access to cancer services, health system/cancer center processes, and fragmented infrastructure. One interviewee noted, “Who wants to travel to one place to get blood and then travel to this place to get an x-ray and radiation and then from there, after you are wiped out from that…go back up to the doctor’s office and then sit there for hours. A patient navigator sees her role is to help these people get through the system better and have better outcomes.” General awareness of PN was also suggested by 1 of 4 interviewees as a provider and health system barrier. One informant discussed this barrier by saying, “[Patients are] not really totally understanding what patient navigation really is because there is such a broad definition out there. People tend to think it is this individual walking them through this journey, or a caregiver, or an individual that is helping out, rather than navigating them through the difficulties and the issues that they may come up against like insurance, pharmaceutical, or nutritional issues.”
Strategies to Overcome Barriers to PN in Appalachia
Nearly half (48.3%) of the interviewees reported providing transportation assistance for individual patients, including 8 (53.3%) of 15 interviewees from sites with PN, compared with 6 (42.9%) of 14 interviewees from sites without PN (Table 4). One interviewee offered these solutions to the problems of travel and lodging: “Because they are traveling a very long distance…we have grant funds available to help them pay for lodging.… The round trip is probably 2 gas tanks full or more.… We have Shell gift cards.” Moreover, 7 (46.7%) of the 15 interviewees from sites with PN reported providing medication assistance. Another navigator described the importance of providing available resources as a strategy, explaining that pharmaceutical companies help make a difference. For example, if a patient is paying $800 per month for medications and the navigator, in cooperation with a pharmaceutical company, is able to obtain those medications at no cost, “that can significantly change someone’s life.” At sites without PN, 4 (28.6%) interviewees reported this same solution. One interviewee described how a community physician contributes to the PN program by saying, “He’s our cancer liaison physician. He’s done a lot of education, and he has actually started a compassion fund here in our area, so that the navigator would have resources to help pay for transportation or medication.... He held events, actually 3 different events, to raise money for the cause, so he’s a champion.”
We found that PN in Appalachia is being conducted mostly by full-time health professionals, primarily registered nurses, and that personal attributes, such as knowing the community and working well with multiple parties, were regarded as important. Personal attributes are particularly important to working successfully with Ap- palachian residents because the Appalachian culture is one of a reliance on self, family, and community.3 When compared with existing PN sites, we found that sites without a PN program reported these personal attributes and transportation and finance issues less frequently as barriers, suggesting an underappreciation of the important characteristics of patient navigator and the magnitude of these barriers for patient care.
Most PN programs in our study addressed all cancer types and were affiliated with multiple organizations, including public health and voluntary groups. Along the cancer continuum, sites with a PN program emphasized the diagnosis and treatment phases, while sites without a PN program reported a more even distribution. In a review of the literature, PN was found to be most effective in increasing participation in cancer screening and adherence to diagnostic follow-up care following an abnormality, with less evidence of their effectiveness in reducing late-stage diagnosis, overcoming delays in initiation of cancer treatment, or improving long-term outcomes in cancer survivorship.22 Our findings support previous literature reports of PN in Appalachia addressing the early stages of the cancer continuum. Interestingly, we found some evidence that PN programs in Appalachia are focusing on the later stages of the cancer continuum as well.
The quantitative evaluation of PN in Appalachia was reported infrequently by sites with PN, whereas sites without PN infrequently reported the need for evaluation data. Interviewees who discussed evaluation typically discussed it in the context of nonspecific data items, such as type of services provided and type of cancer, or individual case reports. Sites with PN reported developing simple tracking tools for their own use. In addition, sites with PN reported limited time for evaluation, particularly because it may reduce the amount of time available for PN. Quantitative and more specific outcome data, such as time from diagnosis to initiation of treatment and cost of the program, will help justify PN to hospital and clinic managers in budget preparation and review.
The study was limited by several features. First, the sample was relatively small and not population-based, so it may not be representative of all of Appalachia or generalizable to other populations. However, as a qualitative study, the primary objective was to provide information about the characteristics of PN in Appalachia, which has not been reported previously. Second, the study relied upon self-
report information, which could lead to information bias. However, the ACCN has a long-standing relationship with community-based organizations and rural hospitals in Appalachia such that interviewees may have been more inclined to report more accurately and fully than if the study had not been associated with the ACCN. Third, standard definitions of PN have not yet been universally accepted. For example, Vargas and colleagues described PN as a system, not a person,27 while the NCONN has made a well-drawn distinction between oncology nurse navigators and lay navigators.30 In addition, interviewees may have interpreted our questions with their own understanding of PN.
However, the study had a number of strengths. First, the study targeted a medically underserved population with recognized cancer health disparities. Second, while the sampling strategy was not population-based, it was systematic and included sites without PN. Thus, it presents information on the perspective of sites that might develop tailored PN programs and related research initiatives for Appalachia. Third, we did not restrict or prescribe the possible responses or the number of responses of interviewees. Last, our exploratory research design was appropriate in understanding the current state of PN in Appalachia, as prior literature has been deficient regarding rural areas.
In conclusion, we found that PN along the cancer continuum is occurring in Appalachia and that several considerations are important for Appalachia. First, the skills of patient navigators should match the responsibilities for the position; in particular, community engagement and cultural sensitivity are important competencies for a patient navigator in Appalachia. Second, the focus of PN along the cancer continuum should be broad, including preventive and early detection stages. This broad approach reflects the needs of rural communities where medical specialization is more limited than in urban communities. Third, lack of resources, such as transportation and finances, appear to be substantial barriers to care for cancer patients in Appalachia. Fourth, ongoing evaluation of PN in Appalachia appears limited but is critical to fully understand the impact of PN in Appalachia. Fifth, a lack of clarity in defining PN and PN programs suggests that future research should develop methods to understand this difference and its impact on PN. Finally, hospitals and cancer centers are not the only location for PN programs in Appalachia, as lay navigation and multiple agency approaches are being utilized.
In summary, PN programs in Appalachia should have realistic expectations of the duties and skills of patient navigators that are concordant with the needs and resources of Appalachian communities. The findings from this study and other PN research in rural areas could be used by the ACCN, rural hospitals, and public health organizations to tailor PN programs to the unique needs and cancer resources in rural Appalachia.
Acknowledgments: The authors are grateful to the project managers of the Appalachian Community Cancer Network—Dierdre Robinson, MSW, at University of Kentucky; Darla Fickle, MA, at The Ohio State University; Sharon Dwyer, MS, at Virginia Polytechnic Institute; and Stephenie Kennedy, MA, at West Virginia University—and the 25 other individuals interviewed for this study. Special thanks to Harold P. Freeman, MD, founder of the patient navigation movement and president and founder of Ralph Lauren Cancer Center for Cancer Care and Prevention, who provided ad hoc consultation to the project. This study was funded by the Appalachia Community Cancer Network (U01 CA114622), and technical assistance was provided by the Community Science and Health Outcomes Core of the Penn State Hershey Cancer Institute.
Disclosures: Authors have nothing to disclose.
Corresponding author: Eugene J. Lengerich, VMD, MS, Professor of Public Health Sciences, Family & Community Medicine, and Health Policy & Administration, The Pennsylvania State University, 600 Centerview Drive, Suite 2200, Mailstop A210, Hershey, PA 17033-0855; e-mail: firstname.lastname@example.org.
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