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.     

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.     

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.     

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.     

Patient navigation for breast and colorectal cancer in 3 community hospital settings: An economic evaluation

BACKGROUND:

The Ralph Lauren Cancer Center implemented patient navigation programs in sites across the United States building on the model pioneered by Harold P. Freeman, MD. Patient navigation targets medically underserved with the objective of reducing the time interval between an abnormal cancer finding, diagnostic resolution, and treatment initiation. In this study, the authors assessed the incremental cost effectiveness of adding patient navigation to standard cancer care in 3 community hospitals in the United States.

METHODS:

A decision‐analytic model was used to assess the cost effectiveness of a colorectal and breast cancer patient navigation program over the period of 1 year compared with standard care. Data sources included published estimates in the literature and primary costs, aggregate patient demographics, and outcome data from 3 patient navigation programs.

RESULTS:

After 1 year, compared with standard care alone, it was estimated that offering patient navigation with standard care would allow an additional 78 of 959 individuals with an abnormal breast cancer screening and an additional 21 of 411 individuals with abnormal colonoscopies to reach timely diagnostic resolution. Without including medical treatment costs saved, the cost‐effectiveness ratio ranged from $511 to $2080 per breast cancer diagnostic resolution achieved and from $1192 to $9708 per colorectal cancer diagnostic resolution achieved.

CONCLUSIONS:

The current results indicated that implementing breast or colorectal cancer patient navigation in community hospital settings in which low‐income populations are served may be a cost‐effective addition to standard cancer care in the United States. Cancer 2012. © 2012 American Cancer Society.     

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.     

Establishing a patient navigator program to reduce cancer disparities in the American Indian communities of Western South Dakota: initial observations and results

BACKGROUND: American Indians (AIs) in the Northern Plains region suffer disproportionately high cancer mortality rates compared with the general US population and with AIs from other regions in the United States. METHODS: The National Cancer Institute developed the Cancer Disparity Research Partnership to address these inequities. This initiative in Rapid City, South Dakota, attempts to lower cancer mortality rates for AIs by access to innovative clinical trials, behavioral research, and a genetic study. Patient navigation is a critical part of the program. Two navigation strategies are described: navigators at the cancer center and navigators on each reservation. A retrospective analysis was performed to determine if navigated patients (n = 42) undergoing potentially curative radiotherapy had fewer treatment interruptions compared with nonnavigated patients (n = 74). RESULTS: A total of 213 AIs with cancer have undergone patient navigation. For those undergoing cancer treatment, the median number of patient navigation interactions was 15 (range 1 to 95), whereas for those seen in follow-up after their cancer treatment, the median number of contacts was 4 (range 1 to 26). AIs who received navigation services during curative radiation treatment had on average 3 fewer days of treatment interruptions compared to AIs who did not receive navigation services during curative radiation treatment (P = .002, N = 116). CONCLUSIONS: Early findings suggest that patient navigation is a critical component in addressing cancer disparities in this population. The program has established trust with individual cancer patients, with the tribal councils, and with the general population on each of the three reservations of western South Dakota.     

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.     

A Qualitative Evaluation of the Avon Foundation Community Education and Outreach Initiative Patient Navigation Program

This study presents a qualitative evaluation of the Avon Foundation Community Education and Outreach Initiative (CEOI) Patient Navigation Program. Qualitative in-depth interviews were conducted with breast cancer patients (N = 18) of the CEOI Patient Navigation Program. Primary strengths of the program include the nature of the relationship between the patient and navigator, the availability of navigators to attend appointments, and the fact that navigators were breast cancer survivors. The process of enrolling patients into the program was a weakness. Participants described positive experiences with this program. They also identified areas of improvement that are relevant to other patient navigation programs in the US.     

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.     

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.     

Do Navigators’ Estimates of Navigation Intensity Predict Navigation Time for Cancer Care?

Patient navigation requires that patient load be equitably distributed. We examined whether navigators could predict the relative amount of time needed by different patients for navigation. Analysis of 139 breast and colorectal cancer patients randomized to the navigation arm of a trial evaluating the effectiveness of navigation. Navigators completed a one-item scale estimating how much navigation time patients were likely to require. Participants were mostly females (89.2%) with breast cancer (83.4%); barriers to cancer care were insurance difficulties (26.6%), social support (18.0%), and transportation (14.4%). Navigator baseline estimates of navigation intensity predicted total navigation time, independent of patient characteristics. The total number of barriers, rather than any specific type of barrier, predicted increased navigator time, with a 16% increase for each barrier. Navigators’ estimate of intensity independently predicts navigation time for cancer patients. Findings have implications for assigning navigator case loads.     

The Role of Patient Navigation on Colorectal Cancer Screening Completion and Education: a Review of the Literature

Although the general assumption is that patient navigation helps patients adhere to CRC screening recommendations, concrete evidence for its effectiveness is still currently under investigation. The present literature review was conducted to explore effectiveness of patient navigation and education on colorectal cancer (CRC) screening completion in medically underserved populations. Data collection included PubMed, Google Scholar, and Cochrane reviews searches. Study inclusion criteria included randomized controlled trials and prospective investigations that included an intervention and control group. Case series, brief communications, commentaries, case reports, and uncontrolled studies were excluded. Twenty-seven of the 36 studies screened for relevance were selected for inclusion. Most studies explored the utility of lay and clinic-based patient navigation. Others implemented interventions that included tailored messaging, and culturally and linguistically appropriate outreach and education efforts to meet CRC screening needs of medically underserved individuals. More recent studies have begun to conduct cost-effectiveness analyses of patient navigation programs that impacted CRC screening and completion. Peer-reviewed publications consistently indicate a positive impact of patient navigation programs on CRC screening completion, as well have provided preliminary evidence for their cost-effectiveness.     

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.     

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.