Patient navigation for American Indians undergoing cancer treatment: utilization and impact on care delivery in a regional healthcare center

BACKGROUND:

A study was undertaken to assess patient navigation utilization and its impact on treatment interruptions and clinical trial enrollment among American Indian cancer patients.

METHODS:

Between February 2004 and September 2009, 332 American Indian cancer patients received patient navigation services throughout cancer treatment. The patient navigation program provided culturally competent navigators to assist patients with navigating cancer therapy, obtaining medications, insurance issues, communicating with medical providers, and travel and lodging logistics. Data on utilization and trial enrollment were prospectively collected. Data for a historical control group of 70 American Indian patients who did not receive patient navigation services were used to compare treatment interruptions among those undergoing patient navigation during curative radiation therapy (subgroup of 123 patients).

RESULTS:

The median number of contacts with a navigator was 12 (range, 1‐119). The median time spent with the navigator at first contact was 40 minutes (range, 10‐250 minutes), and it was 15 minutes for subsequent contacts. Patients treated with radiation therapy with curative intent who underwent patient navigation had fewer days of treatment interruption (mean, 1.7 days; 95% confidence interval [CI], 1.1‐2.2 days) than historical controls who did not receive patient navigation services (mean, 4.9 days; 95% CI, 2.9‐6.9 days). Of the 332 patients, 72 (22%; 95% CI, 17%‐26%) were enrolled on a clinical treatment trial or cancer control protocol.

CONCLUSIONS:

Patient navigation was associated with fewer treatment interruptions and relatively high rates of clinical trial enrollment among American Indian cancer patients compared with national reports. Cancer 2011. © 2010 American Cancer Society.     

Establishing trusting partnerships for successful recruitment of American Indians to clinical trials.

BACKGROUND: Cancer mortality rates among American Indians (AIs) in the Northern Plains are among the highest in the nation. Reasons for this disparity are unclear but are probably due to multiple barriers. AIs appear to experience more intense side effects from therapeutic radiation compared with other populations. This differential response to treatment, a disparity in itself, might be overcome if the molecular reasons were better understood. METHODS: The National Cancer Institute developed the Cancer Disparity Research Partnership to address these inequities. This initiative, known as the Walking Forward program, attempts to lower cancer mortality rates for AIs by increasing access to innovative clinical trials, behavioral research, patient navigation, and the ataxia telangiectasia mutated (ATM) gene study. The ATM component of the project was initiated to determine if there is a molecular basis for this apparent differential response to therapeutic radiation. Successful implementation of the genetic study relied on achieving a trusting partnership with AIs since a lack of trust has historically been a barrier to performing research in this population. The authors detail the nature of building partnerships and trust by utilizing lessons learned. RESULTS: Establishing a trusting partnership between a community hospital and AIs in South Dakota resulted in successful recruitment to this ATM clinical trial. To date, 26 AIs and 40 non-AIs have consented to participate in this ATM analysis. Their shared human desire to assist others, especially family and community members, and their demonstrated responsiveness to community priorities by academic researchers are the primary reasons for participant eagerness to enroll on this study. CONCLUSIONS: The relatively rapid approval of the ATM genetic study by multiple tribal organizations and the successful accrual of AIs on this study reflect the trusting partnerships achieved at the patient and community levels.     

Lay patient navigator program implementation for equal access to cancer care and clinical trials: essential steps and initial challenges

BACKGROUND: Disparities in cancer detection, treatment, and outcomes among racial/ethnic minorities and low-income patients are well documented. One way to reduce these disparities is to use patient navigators to address barriers to care. However, little information about optimal characteristics of navigator programs or considerations for those interested in setting up such programs is available. METHODS: The design and implementation of a patient navigator program for underserved cancer patients in an urban, nonacademic community hospital setting is described. The program, which used lay navigators, was conceived as a component of the Urban Latino African American Cancer (ULAAC) Disparities Project in South Los Angeles, a National Cancer Institute (NCI)-sponsored project to improve cancer care and clinical trial access for minority and low-income patients. RESULTS: Careful initial planning, including input from a community advisory committee, was essential to smooth program implementation. Thirty-one volunteers completed navigator training in the program's first year of operation. Of 135 patients offered navigation services, 75 (56%) accepted, and preliminary feedback from patients, navigators, and providers suggests high levels of satisfaction with navigation. Standardized templates used by navigators and staff to record key information are proving helpful for monitoring quality and outcomes (such as effectiveness in addressing specific barriers to care) and continually improving the program. CONCLUSIONS: The ULAAC program represents a viable model for developing lay navigator programs in community hospitals. Preliminary assessments suggest that the program has a positive effect on minority and low-income cancer patients' experience with care and reduces barriers to care. Additional time and research are needed, however, to fully assess the impact on care and outcomes.     

Moving the Agenda Forward for Cancer Patient Navigation: Understanding Volunteer and Peer Navigation Approaches

Across Canada, individuals diagnosed with cancer have identified concerns about access to services before, during, and following treatment, highlighting a very real uncertainty that exists about where to turn for information and assistance. Cancer patient navigation programs are emerging as effective interventions, well-equipped to meet these patients’ diverse needs. While many provinces have initiated professionally led navigation services, little is known about the potential for volunteer-led navigation. This article highlights pilot programs in British Columbia, Ontario, and Newfoundland, where volunteers are engaged as lay or peer providers of cancer patient navigation services. By describing the recruitment, training, and role of the navigators within each program, the paper underscores the capacity for unique programs to work within current care frameworks across distinct communities. These programs provide an innovative approach to overcoming barriers and augmenting access to supportive care for cancer patients and their family members.     

Barriers and Challenges of Cancer Patients and Their Experience with Patient Navigators in the Rural US/Mexico Border Region

Patient navigation is a widely used approach to minimize health disparities among socioeconomically marginalized cancer patients. Although patient navigation is widely used, there is a dearth of studies exploring patient experience with navigators among rural cancer patients. This qualitative study explores the challenges and barriers to cancer care faced by cancer patients living in a US/Mexico border region in Southern California. We individually interviewed 22 cancer patients, most of whom were Latino. Data were analyzed using constant comparison with a reiterative analysis method. The main themes relating to barriers to care and experiences with patient navigators include the following: (1) removing financial barriers, (2) coordinating services, and (3) providing therapeutic interventions. The cancer patients highly valued the navigators for their knowledge about community resources, support, and advocacy. This study suggests that it is imperative that navigators know the regional and binational health care utilization issues that impact patients’ access to cancer care.     

Using navigators to improve care of underserved patients: current practices and approaches

BACKGROUND: Logistic, cultural, educational, and other barriers can impede the delivery of high-quality cancer care to underserved patients. Patient navigation services represent one innovation for addressing perceived barriers to care encountered by disadvantaged patients. In this report, the authors have 1) defined patient navigation, distinguishing it from other cancer support services; 2) described how programs are organized; and 3) discussed the need for research on program effectiveness. METHODS: Information was examined on navigation programs published in the scientific literature and on line. Qualitative research also was conducted, consisting of direct observation of patient care in cancer clinics with and without navigators in northern California, in-person interviews with personnel and patients in the clinics observed, and telephone interviews with navigators at four sites across the United States. RESULTS: The authors found that navigation services have been implemented at all stages of cancer care: prevention, screening, treatment, and survival. Navigators differ from other cancer support personnel in their orientation toward flexible problem solving to overcome perceived barriers to care rather than the provision of a predefined set of services. There are no rigorous demonstrations of the effects and effectiveness of navigation, although such studies are underway. CONCLUSIONS: Currently, patient navigation is understudied, and literature documenting its effects and effectiveness is scant. Rigorous studies are needed of the navigator role and program costs and benefits. Such studies will facilitate an assessment of program effectiveness, feasibility across a range of health care settings, and performance relative to alternative approaches for addressing barriers to care among the underserved.     

A Community-Based Outreach Navigator Approach to Establishing Partnerships for a Safety Net Mammography Screening Center

Washington, DC, has one of the highest incidence and mortality rates for breast cancer in the USA. Patient navigation coupled with informational and community resources are important strategies that assist patients’ access and help them understand the complex world of cancer care. The Georgetown Lombardi Comprehensive Cancer Center’s Capital Breast Care Center (CBCC) is a safety net mammography screening center that utilizes a community-based navigation program. In addition to providing assistance with coordination of clinical services, navigators at CBCC are integral in establishing intra-community partnerships to educate members of the community about breast cancer screening. The aim of this study was to detail the role of patient navigation at the CBCC, with an emphasis on community engagement and community-based partnerships. We describe the process by which CBCC established partnerships with multiple community organizations between 2004 and 2015 and analyzed data of women screened in relationship to the evolution of the patient navigation services. Application of the CBCC navigation model that integrates individual patient outreach with community engagement has yielded viable and lasting community partnerships that have resulted in an increase in mammography uptake, especially among medically underserved minority women.     

Evaluating the cost‐effectiveness of cancer patient navigation programs: Conceptual and practical issues

Patient navigators—individuals who assist patients through the healthcare system to improve access to and understanding of their health and healthcare—are increasingly used for underserved individuals at risk for or with cancer. Navigation programs can improve access, but it is unclear whether they improve the efficiency and efficacy of cancer diagnostic and therapeutic services at a reasonable cost, such that they would be considered cost‐effective. In the current study, the authors outline a conceptual model for evaluating the cost‐effectiveness of cancer navigation programs. They describe how this model is being applied to the Patient Navigation Research Program, a multicenter study supported by the National Cancer Institute's Center to Reduce Cancer Health Disparities. The Patient Navigation Research Program is testing navigation interventions that aim to reduce time to delivery of quality cancer care (noncancer resolution or cancer diagnosis and treatment) after identification of a screening abnormality. Examples of challenges to evaluating cost‐effectiveness of navigation programs include the heterogeneity of navigation programs, the sometimes distant relation between navigation programs and outcome of interest (eg, improving access to prompt diagnostic resolution and life‐years gained), and accounting for factors in underserved populations that may influence both access to services and outcomes. In this article, the authors discuss several strategies for addressing these barriers. Evaluating the costs and impact of navigation will require some novel methods, but will be critical in recommendations concerning dissemination of navigation programs. Cancer 2009. © 2009 American Cancer Society.     

Patient navigation: State of the art or is it science?

First implemented in 1990, patient navigation interventions are emerging today as an approach to reduce cancer disparities. However, there is lack of consensus about how patient navigation is defined, what patient navigators do, and what their qualifications should be. Little is known about the efficacy and cost-effectiveness of patient navigation. For this review, the authors conducted a qualitative synthesis of published literature on cancer patient navigation. By using the keywords 'navigator' or 'navigation' and 'cancer,' 45 articles were identified in the PubMed database and from reference searches that were published or in press through October 2007. Sixteen studies provided data on the efficacy of navigation in improving timeliness and receipt of cancer screening, diagnostic follow-up care, and treatment. Patient navigation services were defined and differentiated from other outreach services. Overall, there was evidence of some degree of efficacy for patient navigation in increasing participation in cancer screening and adherence to diagnostic follow-up care after the detection of an abnormality. The reported increases in screening ranged from 10.8% to 17.1%, and increases in adherence to diagnostic follow-up care ranged from 21% to 29.2% compared with control patients. There was less evidence regarding the efficacy of patient navigation in reducing either late-stage cancer diagnosis or delays in the initiation of cancer treatment or improving outcomes during cancer survivorship. There were methodological limitations in most studies, such as a lack of control groups, small sample sizes, and contamination with other interventions. Although cancer-related patient navigation interventions are being adopted increasingly across the United States and Canada, further research will be necessary to evaluate their efficacy and cost-effectiveness in improving cancer care.     

Providing Community Education: Lessons Learned from Native Patient Navigators

Native Navigators and the Cancer Continuum (NNACC) was a community-based participatory research study among five American Indian organizations. The intervention required lay Native Patient Navigators (NPNs) to implement and evaluate community education workshops in their local settings. Community education was a new role for the NPNs and resulted in many lessons learned. NPNs met quarterly from 2008 through 2013 and shared lessons learned with one another and with the administrative team. In July 2012, the NPNs prioritized lessons learned throughout the study that were specific to implementing the education intervention. These were shared to help other navigators who may be including community education within their scope of work. The NPNs identified eight lessons learned that can be divided into three categories: NPN education and training, workshop content and presentation, and workshop logistics and problem-solving. A ninth overarching lesson for the entire NNACC study identified meeting community needs as an avenue for success. This project was successful due to the diligence of the NPNs in understanding their communities’ needs and striving to meet them through education workshops. Nine lessons were identified by the NPNs who provided community education through the NNACC project. Most are relevant to all patient navigators, regardless of patient population, who are incorporating public education into navigation services. Due to their intervention and budget implications, many of these lessons also are relevant to those who are developing navigation research.     

Do Better-Rated Navigators Improve Patient Satisfaction with Cancer-Related Care?

Patient navigation has emerged as a promising strategy for addressing racial-ethnic and socioeconomic disparities in cancer-related care. However, little is known about the impact of patients’ perception of the quality of navigation on patient outcomes. We examined the impact of better-rated navigators on patients’ satisfaction with cancer-related care. The sample included 1,593 adults (85.8 % with abnormal cancer screening and 14.2 % with confirmed cancer diagnosis) who received patient navigation. We defined better-rated navigators as those scoring above the first quartile of mean scores on the Patient Satisfaction with Interpersonal Relationship with Navigator scale. We defined patient satisfaction based on scores above or below the median of the Patient Satisfaction with Cancer-Related Care (PSCC) scale. We controlled for patient and site characteristics using backward selection logistic regression analyses. Among patients with abnormal screening, having a better-rated navigator was associated with higher score on the PSCC (p?<?0.05). After controlling for other bivariate predictors of satisfaction (e.g., age, race, income, and household size), navigation by better-rated navigators was associated with a greater likelihood of having higher patient satisfaction [odds ratio (OR), 1.38; 95 % confidence interval (CI), 1.05–1.82]. Similar findings between better-rated navigators and score on the PSCC were found for participants with diagnosed cancer (OR, 3.06; 95 % CI, 1.56–6.0). Patients navigated by better-rated navigators reported higher satisfaction with their cancer-related care.     

Regional patterns and trends in cancer mortality among American Indians and Alaska Natives, 1990-2001

BACKGROUND: National estimates of cancer mortality indicate relatively low rates for American Indians (AIs) and Alaska Natives (ANs). However, these rates are derived from state vital records in which racial misclassification is known to exist. METHODS: In this cross-sectional study of cancer mortality among AIs and ANs living in counties on or near reservations, the authors used death records and census population estimates to calculate annualized, age-adjusted mortality rates for key cancer types for the period 1996-2001 for 5 geographic regions: East (E), Northern Plains (NP), Southwest (SW), Pacific Coast (PC), and Alaska (AK). Mortality rate ratios (MRRs) and 95% confidence intervals (95% CIs) also were calculated to compare rates with those in the general United States population (USG) for the same period. To examine temporal trends, MRRs for 1996-2001 were compared with MMRs for 1990-1995. RESULTS: The overall cancer mortality rate was lower in AIs and ANs (165.6 per 100,000 population; 95% CI, 161.7-169.5) than in the USG (200.9 per 100,000 population; 95% CI, 200.7-201.2). In the regional analysis, however, cancer mortality was higher in AK (MRR=1.26; 95% CI, 1.17-1.36) and in the NP (MMR=1.37; 95% CI, 1.31-1.44) than in the USG. In both regions, the excess mortality was attributed to cancer of the lung, colorectum, liver, stomach, and kidney. In the SW, the mortality rate for cancer of the liver and stomach was higher than the rate in the USG, in contrast with that region's nearly 4-fold lower mortality rate for lung cancer (MRR=0.23; 95% CI, 0.19-0.27). Rates of cervical cancer mortality were higher among AIs and ANs (MRR=1.35; 95% CI, 1.13-1.62), notably in the NP and SW. Rates of breast cancer mortality generally were lower (MRR=0.60; 95% CI, 0.55-0.66), notably in the PC, SW, and E. Cancer mortality increased by 5% in AIs and ANs (MRR for 1996-2001 compared with 1990-1995: 1.05; 95% CI, 1.01-1.08), whereas it decreased by 6% in the USG (MMR=0.94; 95% CI, 0.94-0.94). CONCLUSIONS: Regional data should guide local cancer prevention and control activities in AIs and ANs. The disparity in temporal trends in cancer mortality between AIs and ANs and the USG gives urgency to improving cancer control in this population.     

Lay Navigator Model for Impacting Cancer Health Disparities

This paper recounts experiences, challenges, and lessons learned when implementing a lay patient navigator program to improve cancer care among medically underserved patients who presented in a primary care clinic with a breast or colorectal cancer abnormality. The program employed five lay navigators to navigate 588 patients. Central programmatic elements were the following: (1) use of bilingual lay navigators with familiarity of communities they served; (2) provision of training, education, and supportive activities; (3) multidisciplinary clinical oversight that factored in caseload intensity; and (4) well-developed partnerships with community clinics and social service entities. Deconstruction of healthcare system information was fundamental to navigation processes. We conclude that a lay model of navigation is well suited to assist patients through complex healthcare systems; however, a stepped care model that includes both lay and professional navigation may be optimal to help patients across the entire continuum.     

Cancer and Employment Issues: Perspectives from Cancer Patient Navigators

Among individuals diagnosed with cancer, 40 % are working-age adults who will face numerous challenges in returning to work, yet oncology providers report limited guidance and uncoordinated communication processes in addressing patients’ work-related issues. Cancer patient navigators are uniquely positioned to fill this care and communication gap due to their focus on both practical matters and clinical care. This cross-sectional study utilized survey methodology to collect quantitative and qualitative data from 58 cancer patient navigators to (1) identify patients’ cancer and employment issues that commonly challenge navigators and (2) identify the necessary training navigators felt would allow them to more effectively help patients deal with cancer and employment issues. Participants from the southeast USA were invited to complete a paper survey while in attendance at a statewide cancer patient navigator conference or online via the state comprehensive cancer coalition’s cancer patient navigator listserv. Results suggest financial burdens, work and treatment conflicts, taking unpaid leave for cancer care, and working through treatment were common concerns among their patients. Navigators also identified employment, legal, government programs, and financial resources as important training and education topics that would help them address their clients’ employment and cancer conflicts. Given the fact that employment issues remain one of the most common unmet need of survivors and the increasing presence of navigators across the USA, it is important to address the role of navigators in meeting patients’ needs regarding cancer and employment and ensure they are provide with adequate training and resources.     

Nurse Navigators’ Views on Patient and System Factors Associated with Navigation Needs among Women with Breast Cancer

Coordinating breast cancer treatment is a complex task that can overwhelm patients and their support networks. Though the Cancer Patient Navigator (CPN) program in Nova Scotia (NS) provides professional assistance to patients, certain groups of patients may still face barriers to accessing its services. Employing interviews and a modified Delphi approach with CPN participants, this study sought to identify factors associated with the need for navigation to help better target CPN program referrals among breast cancer patients. Six CPNs were recruited directly through the CPN program manager for interviews and surveys. The CPNs identified 27 different factors, which were divided into 4 categories: sociodemographic, psychological, clinical and health systems. While these patient factors (particularly sociodemographic) are not directly modifiable, awareness of their association with the need for navigation could be used to better target patients with a high need for navigation for referral to CPN services.     

Patient Navigators’ Reflections on the Navigator-Patient Relationship

Patient navigation emerged as a strategy to reduce cancer disparities among low-income and minority patients and has demonstrated efficacy in improving clinical outcomes. Observational studies have contributed valuable evaluations of navigation processes and tasks; however, few have offered in-depth reflections about the relationship between patient and navigator from the navigators’ perspective. These approaches have addressed the emotional and relational components of patient navigation through the lens of process factors, relegating the navigator-patient relationship to a siloed, compartmentalized functionality. To expand upon existing task-oriented definitions of navigation, we conducted qualitative interviews among community-based patient navigators who coordinated care for uninsured, predominantly Hispanic, women receiving cancer screening and follow-up care in a county outside Chicago. Interviews were recorded, transcribed, and analyzed for themes within the navigator-patient relationship domain. The main themes that emerged centered on relational roles, relational boundaries, and ideal navigator relational qualities. While patient navigators described engaging with patients in a manner similar to a friend, they stressed the importance of maintaining professional boundaries. Navigators’ support assisted patients in bridging their hospital and community lives, a result of navigators’ investment in both hemispheres. We conclude that the navigator-patient relationship is not a self-contained utility, but rather the medium through which all other navigator functions are enabled. These insights further characterize the navigator-patient relationship, which will help shape the development of future navigation programs and support the need for further research on the impact of relationship factors on clinical and psychosocial outcome measures.     

Patient navigation: an update on the state of the science

Although patient navigation was introduced 2 decades ago, there remains a lack of consensus regarding its definition, the necessary qualifications of patient navigators, and its impact on the continuum of cancer care. This review provides an update to the 2008 review by Wells et al on patient navigation. Since then, there has been a significant increase in the number of published studies dealing with cancer patient navigation. The authors of the current review conducted a search by using the keywords "navigation" or "navigator" and "cancer." Thirty-three articles published from November 2007 through July 2010 met the search criteria. Consistent with the prior review, there is building evidence of some degree of efficacy of patient navigation in terms of increasing cancer screening rates. However, there is less recent evidence concerning the benefit of patient navigation with regard to diagnostic follow-up and in the treatment setting, and a paucity of research focusing on patient navigation in cancer survivorship remains. Methodological limitations were noted in many studies, including small sample sizes and a lack of control groups. As patient navigation programs continue to develop across North America and beyond, further research will be required to determine the efficacy of cancer patient navigation across all aspects of the cancer care continuum.