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.     

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.     

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.     

The Association between Survivorship Care Plans and Patient-Reported Satisfaction and Confidence with Follow-Up Cancer Care Provided by Primary Care Providers

Survivorship care plans aim to facilitate a smooth transition from tertiary to primary care settings after primary cancer treatment is completed. This study sought to identify the sociodemographic factors associated with receiving a survivorship care plan and examine the relationship between receiving a plan and confidence in follow-up care delivered by primary care providers. A cross-sectional analysis of the Canadian Partnership Against Cancer’s Experiences of Cancer Patients in Transition Study was conducted (n = 9970). Separate adjusted multinomial logistic regression models assessed the relationship between survivorship care plans and follow-up care outcomes. Proportion of survivors more likely to receive a survivorship care plan varied by numerous sociodemographic and medical factors, such as cancer type (colorectal and prostate), gender (male), and education (high school or less). In unadjusted and adjusted models, individuals who received a Survivorship Care Plan had significantly higher odds of: having felt their primary care providers were involved; agreeing that their primary care providers understood their needs, knew where to find supports and services, and were able to refer them directly to services; and were confident that their primary care provider could meet their follow-up care needs.     

The role of district nursing: perspectives of cancer patients and their carers before and after hospital discharge

The role of the district nurse (DN) is difficult to define. Knowledge about the perspectives of patients with cancer, and their informal carers, on the roles of DNs and community services is lacking. The aim of this study is to identify the roles of DNs and community services as perceived by patients with cancer and their carers before and after hospital discharge. Seventy-one pre- and post-discharge conversational interviews were conducted with cancer patients and carers, and analysed thematically. Some interviewees lacked knowledge about services, were confused about differential roles and/or held stereotypical views. Some failed to disclose needs to services, received insufficient support or experienced unnecessary and inconvenient visits. Patients with few or no physical care needs were surprised to receive DN visits. Those receiving personal care from agency carers expressed dissatisfaction. Cancer patients and carers may benefit from post-discharge/ongoing assessment by DNs. However, effectiveness could be inhibited by limited disclosure caused by confusion, stereotyping, negative experiences and ideas that other patients have greater needs. Information might diminish these factors but, first, services need to clarify their roles. Organization and delivery of personal care services varies locally and DNs provide personal care during terminal illness. Community services should perform intra- and interservice clarification before publicizing differential roles to cancer patients and carers. This might facilitate disclosure of need to DNs. Patient and carer needs for information on service roles, and patients' preferred roles in self-care are under-researched.     

Older people living alone at home with terminal cancer

This study describes the lived experiences of older people coping with terminal cancer and living alone, focusing on how they face challenges of the biographical life changes from their disease progression. Face‐to‐face semi‐structured interviews were conducted in two phases with palliative care clients of a community‐based service in Western Australia (2009–2011): Brief interviews with 43 cancer patients who live alone and then in‐depth interviews with 8 of them. Using biographical disruption as the analytical framework for interpreting the qualitative data, four main themes emerged: Biographical disruption: adjusting to change; Biographical continuity: preserving normality; Biographical reconstruction: redefining normality; and Biographical closure: facing the end. Biographical disruption was a suitable framework for analysis, permitting identification of the biographical disruptions of the individual's world and the reframing that is undertaken by the individual to maintain autonomy and independence while acknowledging and accepting their closeness to death. Understanding the factors associated with the individual's need to maintain their own identity will enable nurses working with this population to tailor support plans that meet the individuals’ needs while maintaining or restoring the person's sense of self. Interventions that directly address end‐of‐life suffering and bolster sense of dignity and personhood need to be considered.     

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.     

Clinical Management of Financial Toxicity–Identifying Opportunities through Experiential Insights of Cancer Survivors,Caregivers, and Social Workers

Perspectives of cancer survivors, caregivers, and social workers as key stakeholders on the clinical management of financial toxicity (FT) are critical to identify opportunities for better FT management. Semi-structured interviews (cancer survivors, caregivers) and a focus group (social workers) were undertaken using purposive sampling at a quaternary public hospital in Australia. People with any cancer diagnosis attending the hospital were eligible. Data were analysed using inductive-deductive content analysis techniques. Twenty-two stakeholders (n = 10 cancer survivors of mixed-cancer types, n = 5 caregivers, and n = 7 social workers) participated. Key findings included: (i) genuine concern for FT of cancer survivors and caregivers shown through practical support by health care and social workers; (ii) need for clarity of role and services; (iii) importance of timely information flow; and (iv) proactive navigation as a priority. While cancer survivors and caregivers received financial assistance and support from the hospital, the lack of synchronised, shared understanding of roles and services in relation to finance between cancer survivors, caregivers, and health professionals undermined the effectiveness and consistency of these services. A proactive approach to anticipate cancer survivors’ and caregivers’ needs is recommended. Future research may develop and evaluate initiatives to manage cancer survivors and families FT experiences and outcomes.     

Understanding Facilitators and Barriers of Online Cancer Information Utilization among Cancer Survivors and their Families: Focus on the Theory of Planned Behavior

Objective: Cancer survivors have various health care needs and are willing to be proactive with their health maintenance. Online information would be a useful resource to guide cancer survivors and their family members. Therefore, identifying the factors that influence Internet searching behaviors among cancer survivors and their family members is a first step toward providing better health care services for cancer care. Methods: We performed focus group interviews that were based on the Theory of Planned Behavior, with thirty-one participants to explore factors related to Internet search behaviors among cancer survivors and their family members. Results: Six themes were identified in the analysis of participant interviews. Attitudes toward searching for health information on the Internet included the themes “Fulfilling unmet needs” and “Confirmation through second opinion.” Themes related to social norms included “a required step for sure” and “helping each other.” In terms of perceived behavioral control, themes included “difficult to choose because of being ‘overwhelmed with information,’” and “complex searching milieu.” Conclusion: It was clear that cancer survivors and their family members had unmet needs for maintaining their health status. They wanted to be informed and actively involved in the decision-making process regarding health management. Consultation and education provided to patients by doctors should not only include information on diet and nutrition but also information on the resulting complications to satisfy their need for reliable health information.     

Patient navigation for underserved patients diagnosed with breast cancer

The elimination of cancer disparities is critically important for lessening the burden of breast cancer (BC). Patient navigator programs (PNPs) have been shown to improve rates of BC screening in underserved communities, but there is a dearth of evidence regarding their benefits after the actual diagnosis of BC. We retrospectively examined sociodemographic characteristics, disease characteristics, and concordance to quality measures (QMs) of BC care among women participating in a PNP that services disadvantaged minority communities in the greater Boston area. Of the 186 PNP patients diagnosed with BC in 2001-2011 in three neighborhood community health centers, treatment data was available for 158 (85%) and race and disease stage information was available for 149 (80%). Regarding stage, 25% were diagnosed with in situ cancer, 32% had stage 1, 25% had stage 2, 13% had stage 3, and 5% had stage 4 BC. Guideline-indicated care was received by 70 of 74 patients (95%) for the hormonal therapy QM, 15 of 17 (88%) patients for the chemotherapy QM, and 65 of 71 (92%) patients for the radiation QM, all similar to published concordance rates at elite National Comprehensive Cancer Network institutions. These findings suggest that PNPs may facilitate evidence-based quality care for vulnerable populations. Future research should prospectively analyze quality metrics to assess measures to improve the process and outcomes of patient navigation in diverse underserved settings, compared with control non-navigated populations.     

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.     

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.     

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.     

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.     

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.     

Patient perceptions of a comprehensive cancer navigation service

Objective

Our aim was to determine the extent to which comprehensive navigation augments the provincial health system for meeting the needs of newly-diagnosed cancer patients (clients). We also assessed reactions of attending physicians to comprehensive navigation.

Methods

Clients who completed navigation as an employee benefit or through membership in an insurance organization were polled to determine whether they needed help beyond that provided by the provincial health system and the extent to which that help was provided by navigation. Exit interviews were analyzed for perceptions of the clients about reactions by their attending physicians to navigation.

Results

Of eligible clients, 72% responded. They reported needing help beyond that which the provincial system could provide in 64%–98% of specified areas. Navigation provided help in more than 90% of those cases. Almost all respondents (98%) appreciated having a designated oncology nurse navigator. Family doctors were perceived to be positive or neutral about navigation in 100% of exit interviews. Oncologists were positive or neutral in 92% (p < 0.001 for difference from family doctors).

Conclusions

In many areas, cancer patients need additional help beyond that which the provincial health system can provide. Comprehensive cancer navigation provides that help to a considerable extent. Clients perceived the reactions of attending physicians to comprehensive navigation to be generally supportive or neutral.     

An exploratory study into the unmet supportive needs of breast cancer patients

This study explores the unmet supportive needs of people with breast cancer attending a London NHS Foundation Trust Hospital. A mixed methods approach was used. One hundred and one patients completed a specially designed questionnaire focusing on their concerns in the previous week, and whether they felt they had been offered sufficient support from health professionals. Seven semi‐structured interviews were then completed in order to gain insight into the need for future developments of services for patients with breast cancer. Pearson's chi‐squared analysis was used to examine whether symptoms reported within 1 year of diagnosis differed from symptoms reported more than 1 year post diagnosis. Fatigue was the most common concern expressed (53%) with no significant difference between the two groups. Emotional concerns and pain were also highly reported (35% and 36%). Only 32% of the questionnaire participants reported that they had been offered support in dealing with their concerns. Most participants (65%) would have liked more support from the healthcare team. From the interviews it was clear that whilst there are gaps in services available, participants were not aware of the range of services already available for people with breast cancer. The results of this study have helped to inform service development, particularly around the management of fatigue.     

What motivates men age > or =50 years to participate in a screening program for melanoma?

BACKGROUND: The screening behavior and screening outcomes of men age > or =50 years was investigated within a randomized controlled trial of a community-based intervention of screening for melanoma, consisting of a community education program, an education program for medical practitioners, and the provision of dedicated skin-screening clinics. METHODS: Data from cross-sectional telephone surveys before (559 completed interviews), at the end (591 completed interview), and at 2 years after the intervention (445 completed interviews) were analyzed. In addition, the authors analyzed data from skin-screening clinics within the intervention program (3355 men age > or =50 years participated). RESULTS: During the intervention period men age > or =50 years increased both their screening behavior and intention to screen. Those men age > or =50 years who reported a past history of removal of a mole as well as other risk factors for skin cancer and positive attitudes toward screening were more likely to participate in skin screening across time. Men age > or =50 years accounted for 20.5% of all skin-screening clinic attendees, 31.3% of those referred for a suspicious lesion, 48.5% of melanomas, and 45% of all keratinocyte carcinomas diagnosed within the screening program, respectively. CONCLUSIONS: The intervention program successfully motivated men age > or =50 years to attend screening for skin cancer, resulting in the highest yield of skin cancer within this subgroup of the population. Messages addressing skin cancer risk factors and attitudes toward skin cancer and screening could be used to target a screening program for melanoma toward men age > or =50 years.