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.     

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.     

Training Experiences of Lay and Professional Patient Navigators for Colorectal Cancer Screening

Patient navigation (PN) is increasingly used in cancer care, but little is known about the identification and training of patient navigators. PN may be implemented by professional health care providers, paraprofessionals, or lay health workers and, therefore, presents an opportunity to compare professional and lay interventionist experiences. The goal of the current report is to compare the training experiences of four professional (Pro) and five lay (LHW) patient navigators enlisted to increase colonoscopy adherence among African American primary care patients. The results of early assessments showed that LHWs’ intervention-related knowledge was significantly lower than that of Pros. However, there were no significant differences in knowledge scores between LHWs and Pros for most subsets of knowledge items in later assessments. Furthermore, there were no significant differences in LHWs’ and Pros’ reported self-efficacy and satisfaction with training. Findings support the use of diverse strategies to train and prepare LHWs as patient navigators.     

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.     

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.     

Evaluation of an Intervention to Enhance the Delivery of Smoking Cessation Services to Patients with Cancer

We describe a brief staff training program to improve the delivery of tobacco cessation services to patients with head and neck cancers. This study utilized a quasi-experimental design to compare the delivery of smoking cessation components and outcomes among patients exposed to either usual care (UC) or an enhanced cessation (EC) program implemented following a 1-h staff education program. Of the 179 subjects enrolled, 112 were recontacted by phone 1 month after their clinic visit. More patients in EC compared to UC reported that they were asked about their smoking status (94.2% vs. 76.6%, p = 0.01), advised to quit (92.3% vs. 72.3%, p = 0.01), prescribed cessation medications (30.8% vs. 3.3%, p < 0.001), and received a support call (53.8% vs. 11.7%, p < 0.001) at the 1-month follow-up. Quit attempts and quit rates between groups were similar. The EC intervention improved the delivery of cessation services in a busy clinical setting, but this failed to increase cessation rates after 1 month.     

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 Impact of a Primetime Cancer Storyline: From Individual Knowledge and Behavioral Intentions to Policy-level Changes

We assessed the educational impact of a primetime network TV storyline that addressed cancer patient navigators. An online survey was administered after the episode aired. Exposed respondents saw the episode (n = 336); unexposed respondents did not (n = 211). Exposed respondents were more likely to report they would recommend a patient navigator (61% vs. 48%, p = 0.01). Clips of the episode were shown to raise awareness of patient navigators in a Congressional Committee meeting before the Patient Navigator Act was signed into law (2005). Entertainment education can have a positive impact on cancer knowledge and can contribute to policy-level decisions.     

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.     

Perceptions and Utilization of Lung Cancer Screening Among Smokers Enrolled in a Tobacco Cessation Program

Background

Although lung cancer screening (LCS) with low-dose computed tomography (LDCT) reduces lung cancer mortality in high-risk patients, most of those eligible are not referred for screening. Tobacco cessation counseling may be an opportune time to educate people about LCS, but little is known about the utilization and perceptions of LCS among people undergoing tobacco cessation treatment.

Urban Women’s Preferences for Learning of Their Mammogram Result: A Qualitative Study

Research suggests that communication of mammogram results is flawed for many low-income ethnic minority women. This study conducted four focus groups with low-income inner-city minority women (n = 34). The goals of our project were: (1) to elucidate women's experiences learning of their result; (2) to elicit their preferences as to how this communication could be improved; and (3) to gather information to help inform the development of a new tool for communicating mammogram results. Salient themes included dissatisfaction with result communication; difficulty elucidating the meaning of a typical results notification letter; a preference for direct verbal communication of results and for print materials that included pictures, testimonials, and an action plan including a hotline to call with questions; and a strong interest in advance education about the likelihood of having to return for additional follow up. Video and other programs to inform patients before the test about what happens after may improve patient satisfaction and enhance women's understanding of their personal result and follow up plan.     

Tobacco Cessation Education for Dentists: An Evaluation of the Lecture Format

Dentists with tobacco cessation training perform more interventions, report increased self-efficacy, preparedness and fewer barriers than those without training. The aim of this study was to assess changes in knowledge, attitudes and behavior of dentists (CE group) at six months following presentation of a standardized tobacco cessation lecture module. These data were compared to those from age and gender-matched controls who did not receive training. The CE group was more likely to feel cessation was very important, score higher on knowledge questions, update tobacco use of continuing patients, ask former smokers about relapse and ask about daily consumption. The CE group was also more likely to discuss the personal relevance of quitting, roadblocks and setting quit dates, identify triggers, discuss pharmacotherapy and provide follow-up. These results suggest that group education appears to be a cost-efficient and effective method of teaching dentists about the latest methods of tobacco cessation.     

Smoking cessation intervention in clinical practice

Physicians are in a unique position to advise smokers to quit because of their ability to integrate the various aspects of nicotine dependence. This review provides an overview on interventions with smokers presenting in a primary care setting. Strategies used for smoking cessation counseling differ according to patient's readiness to quit. For smokers who do not intent to quit smoking, physicians should inform and sensitize patients about tobacco use and cessation, especially by personalizing benefits to quit and challenging smokers' beliefs. For smokers who are insecure, physicians should use motivational strategies, such as discussing barriers to cessation and their solutions. For smokers ready to quit, the physician should show strong support, help set a quitting date, prescribe pharmaceutical therapies for nicotine dependence, such as replacement therapy and/or bupropion, with instructions for use, and suggest behavioral strategies to prevent relapse.     

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.     

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.     

Assessing Deaf Cultural Competency of Physicians and Medical Students

The Medical Students, Cancer Control, and the Deaf Community Training program (DCT) intended to create physicians who were culturally competent to care for deaf patients were evaluated. DCT medical students (n = 22), UCSD medical faculty (n = 131), and non-DCT medical students (n = 211) were anonymously surveyed about their perceptions related to deaf patients, deaf cultural competency, and interpreter use. The faculty and non-DCT medical students displayed less knowledge than the DCT students. These findings suggest that training medical students in deaf cultural competency can significantly increase their capacity to care for community members and reduce the health disparities experienced by this community.     

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.     

Training future pharmacists at a minority educational institution: evaluation of the Rx for change tobacco cessation training program.

OBJECTIVES: To estimate the impact of Rx for Change, an 8-h tobacco cessation training program on pharmacy students' perceived counseling skills, confidence for counseling, and future counseling of patients for tobacco cessation. METHODS: Unlinked, pre- and post-training surveys were administered to 142 pharmacy students enrolled at Texas Southern University, a primarily minority and historically black educational institution. RESULTS: Post-training counseling abilities were significantly improved over pretraining values for each of the five key components of tobacco cessation counseling (Ask, Advise, Assess, Assist, and Arrange), overall counseling abilities, and confidence for counseling (P < 0.001). Racial/ethnic differences in self-reported overall counseling was observed (P = 0.01). Ninety-one percent of participants believed that the training would increase the number of patients whom they counsel for cessation, and 95% believed that it would improve the quality of counseling that they provide. At least 95% of participants believed that the pharmacy profession should be more active in preventing patients from starting smoking and helping patients to stop smoking. CONCLUSIONS: The Rx for Change program had a positive impact on perceived abilities and confidence for providing tobacco cessation counseling to patients. While it is important that all current and future health care providers receive specialized tobacco cessation training, it is particularly important for clinicians of racial/ethnic minority backgrounds, who are more likely to practice in geographic areas with a high density of population subgroups at an elevated risk for tobacco-related mortality. In particular, pharmacists, who are uniquely positioned within the community to provide care to all patients, including the medically underserved, must be equipped with the necessary skills to assist patients with quitting.