Patient navigation job roles by levels of experience: Workforce Development Task Group, National Navigation Roundtable.

PLAIN LANGUAGE SUMMARY: Cancer patient navigators work in diverse settings ranging from community-based programs to comprehensive cancer centers to improve outcomes in underserved populations by eliminating barriers to timely cancer prevention, early detection, diagnosis, treatment, and survivorship in a culturally appropriate and competent manner. This article clarifies the roles and responsibilities of Entry, Intermediate, and Advanced level cancer patient navigators. The competencies described in this article apply to patient navigators, nurse navigators, and social work navigators. This article provides a resource for administrators to create job descriptions for navigators with specific levels of expertise and for patient navigators to advance their oncology careers and attain a higher level of expertise.

Increasing Lung Cancer Screening for High-Risk Smokers in a Frontier Population.

Northern Plains American Indians (AIs) have some of the highest smoking and lung cancer mortality rates in the USA. They are a high-risk population in which many are eligible for low-dose computed tomography (LDCT) screening, but such screening is rarely used. This study investigated methods to increase LDCT utilization through both a provider and community intervention to lower lung cancer mortality rates. This study used the Precaution Adoption Model for provider and community interventions implemented in four study regions in western South Dakota. The goal was to increase LDCT screening for eligible participants. Intake surveys and LDCT screenings were compared at baseline and 6 months following the education programs for both interventions. A total of 131 providers participated in the provider intervention. At the 6-month follow-up survey, 31 (63%) referred at least one patient for LDCT (p < 0.05). Forty (32.3%) community participants reported their provider recommended an LDCT and of those, 30(75%) reported getting an LDCT (p < 0.05). A total of 2829 patient surveys were completed at the imaging sites and most (88%, n = 962) cited provider recommendation as their reason for obtaining an LDCT. Almost half (46%; n = 131) of the referring providers attended a provider education workshop, and 73% of the providers worked at a clinic that hosted at least one community education session. Over the study period, LDCT utilization increased from 640 to 1706, a 90.9% increase. The provider intervention had the strongest impact on LDCT utilization. This study demonstrated increased LDCT utilization through the provider intervention but increases also were documented for the other intervention combinations. The community-based education program increased both community and provider awareness on the value of LDCTs to lower lung cancer mortality rates.

Collective pursuit for equity in cancer care: The National Navigation Roundtable.

BACKGROUND: The evidence continues to build in support of implementing patient navigation to reduce barriers and increase access to care. However, health disparities remain in cancer outcomes. The goal of the National Navigation Roundtable (NNRT) is to serve as a convener to help support the field of navigation to address equity. METHODS: To examine the progress and opportunities for navigation, the NNRT submitted a collection of articles based on the results from 2 dedicated surveys and contributions from member organizations. The intent was to help inform what we know about patient navigation since the last dedicated examination in this journal 10 years ago. RESULTS: The online survey of >700 people described navigators and examined sustainability and policy issues and the longevity, specific role and function, and impact of clinical and nonclinical navigators in addition to the role of training and supervision. In addition, a full examination of coronavirus disease 2019 and contributions from member organizations helped further define progress and future opportunities to meet the needs of patients through patient navigation. CONCLUSIONS: To achieve equity in cancer care will demand the sustained action of virtually every component of the cancer care system. It is the hope and intent of the NNRT that the information presented in this supplement will be a catalyst for action in this collective action approach.

Factors Associated with Cancer Screening Among Hopi Men.

Cancer screening rates remain low among American Indian men, and cancer screening behaviors and barriers to cancer screening among American Indian men are not well understood. This study evaluated cancer screening behaviors in 102 Hopi men who were 50 years of age or older from the Hopi Survey of Cancer and Chronic Disease. Reported cancer screening frequencies were 15.7%, 45.1%, and 35.3% for fecal occult blood test (FOBT), colonoscopy, and prostate-specific antigen (PSA) test, respectively. Among men who reported having had a FOBT, 81.2% had the test more than 1 year ago. Among men who reported a colonoscopy, 60.8% had colonoscopy within the past 3 years. Similarly, among men who reported having had PSA, 72.3% had PSA within the past 3 years. "No one told me" was the most common answer for not undergoing FOBT (33.7%), colonoscopy (48.2%), and PSA (39.4%). Men who reported having had a PSA or digital rectal exam were three times as likely to also report having a FOBT or colonoscopy (odds ratio [OR] 3.19, 95% confidence interval [CI]: 1.21-8.46). Younger age (< 65) was associated with reduced odds of ever having prostate cancer screening (OR 0.28, 95% CI: 0.10-0.77). Ever having colorectal cancer screening and previous diagnosis of cancer increased odds of ever having prostate cancer screening (OR 3.15, 95% CI: 1.13-8.81 and OR 5.28, 95% CI: 1.15-24.18 respectively). This study illustrates the importance of community cancer education for men to improve cancer screening participation.

Association of Tobacco Use During Pregnancy, Perceived Stress, and Depression Among Alaska Native Women Participants in the Healthy Pregnancies Project.

INTRODUCTION: In general population samples, higher levels of stress and depression have been associated with increased prevalence of smoking in pregnancy. Little is known about the association of prenatal tobacco use, stress, and depression among American Indian or Alaska Native (AI/AN) women. METHODS: The Healthy Pregnancies Project is a cluster-randomized controlled trial, evaluating a community-level intervention compared with usual care, for reducing tobacco use during pregnancy and postpartum among AN women in 16 villages in western Alaska. This cross-sectional study analyzed baseline data from enrolled pregnant women. Baseline measures included the self-reported, 7-day, point-prevalence current use of any tobacco, Perceived Stress Scale (PSS), and the Center for Epidemiological Studies-Depression (CES-D). Generalized estimating equations (GEE) analyses adjusted for village, participant age, and gestational age. RESULTS: Participants (N = 352) were on average (SD) 25.8 (5.0) years of age and at 26.8 (9.8) weeks gestation. 66.5% were current tobacco users, of which 77% used Iqmik, a homemade form of smokeless tobacco. Compared with nonusers, tobacco users reported lower PSS score (p = .020) and less clinical levels of depression (CES-D ≥ 16) (18.1% vs. 9.3%, p = .21). Findings were not accounted for by nicotine dependence severity or self-reported tobacco use before pregnancy. CONCLUSIONS: In this sample of pregnant AN women, tobacco users report less stress and clinical levels of depression than nonusers. A potential challenge with tobacco treatment for pregnant AN women is to provide alternative ways of deescalating stress and affect management instead of using tobacco. IMPLICATIONS: This study contributes novel information on the association of tobacco use, perceived stress, and depression among Alaska Native women enrolled in a clinical trial to promote healthy pregnancies. Most prior studies addressing this topic were conducted among general population samples of pregnant women who smoked cigarettes. Little is known about these associations with prenatal smokeless tobacco, or among American Indian or Alaska Native women. The results are contrary to findings reported previously, because current tobacco use was associated with less stress and depression than nonuse. The study findings have implications for cessation treatment for this tobacco-use disparity group.

How can an Education Workshop Serve as an Intervention for American Indian Screening Participation.

American Indians (AIs) continue to have elevated cancer incidence and mortality, and most have issues accessing cancer screening services. During 2013-2014, Mayo and its partners created Native Cancer 101 Module 10 "Prevention and Early Cancer Detection" education workshop. A community-based AI organization implemented nine of these workshops during 2014-2015 via diverse venues. Nearly all participants eligible for at least one type of cancer screening participated in a workshop and consented to follow-up within 3 to 6 months to determine if screenings had been completed or scheduled. Native Cancer 101 Module 10 workshops were conducted with 150 community members of whom 6 had recently completed cancer screening (n = 144). The workshops had a 25.20% increase in knowledge, and 97.1% of subjects responded that they would recommend the workshop to their friends and family. Most (136 of 144) submitted a consent form to be contacted 3 to 6 months following the workshop. Patient navigators reached 86 (63.2%) of the consented participants in the follow-up calls after the workshop, and 63 (46.3%) self-reported that they had completed at least one cancer screening test for which they were eligible. The single implementation of the workshop influenced community participants' completion of cancer screening.

Findings from American Indian Needs Assessments.

Because of decreased access and dismal survival rates, strategies need to be developed to increase cancer awareness and facilitate cancer prevention, early detection, and screening activities within American Indian (AI) populations. The purpose of this study was to develop a locally tailored needs assessment to collect cancer prevention, control, and risk factor information and knowledge, attitude, and perceived behavior (hereafter referred to as "needs assessment") data from 500 community members living in 3 geographically diverse settings: the Southeastern USA, the Rocky Mountain region, and the Northern Plains. Needs assessment data helped identify local health priorities and create a pilot cancer prevention and early detection education intervention. There were two versions of common items of the instrument: short (~35 items) and long (55 items), and each partner added items that were recommended by their local AI Advisory Committee. Each partner collaborated with local AI organizations to identify and recruit participants at community venues. During the sessions, facilitators used Power Point® slides and ARS equipment and software to anonymously collect participants' responses. The partners collected needs assessment data from 677 community members over a 4-year period. Cancer education knowledge was low, barriers to accessing timely cancer screening and care services were excessive, tobacco use was excessive, and daily physical activity was insufficient for most participants. ARS was an effective way to collect needs assessment information. During discussions following the data collection, community members requested more cancer education opportunities, access to patient navigation services, and cultural competency training for healthcare providers.

Reality Versus Grant Application Research "Plans".

This article describes the implementation of the American Indian mHealth Smoking Dependence Study focusing on the differences between what was written in the grant application compared to what happened in reality. The study was designed to evaluate a multicomponent intervention involving 256 participants randomly assigned to one of 15 groups. Participants received either a minimal or an intense level of four intervention components: (1) nicotine replacement therapy, (2) precessation counseling, (3) cessation counseling, and (4) mHealth text messaging. The project team met via biweekly webinars as well as one to two in-person meetings per year throughout the study. The project team openly shared progress and challenges and collaborated to find proactive solutions to address challenges as compared to what was planned in the original grant application. The project team used multiple strategies to overcome unanticipated intervention issues: (1) cell phone challenges, (2) making difficult staffing decisions, (3) survey lessons, (4) nicotine replacement therapy, (5) mHealth text messages, (6) motivational interviewing counseling sessions, and (7) use of e-cigarettes. Smoking cessation studies should be designed based on the grant plans. However, on the ground reality issues needed to be addressed to assure the scientific rigor and innovativeness of this study.

The experience of treatment barriers and their influence on quality of life in American Indian/Alaska Native breast cancer survivors.

BACKGROUND: American Indian and Alaska Native (AI/AN) breast cancer survivors experience disparities in breast cancer incidence and age-adjusted mortality compared with non-Hispanic white (NHW) breast cancer survivors. In addition, mortality-to-incidence rates indicate that AI/ANs continue to have the poorest survival from breast cancer compared with other racial groups. "Native American Cancer Education for Survivors" (NACES) is a cultural education and support intervention for AI/AN patients with cancer that collects data from voluntary participants through the NACES quality-of-life (QOL) survey regarding their cancer experience and survivor journey. METHODS: Data from the NACES QOL survey were analyzed to determine whether barriers accessing and during initial cancer treatment impacted QOL domains for AI/AN cancer survivors. Exploratory analyses of selected variables were conducted and were followed by Kruskal-Wallis tests to determine whether these barriers influenced survivorship QOL for AI/AN breast cancer survivors. RESULTS: AI/AN breast cancer survivors' social QOL was significantly affected by barriers to accessing cancer treatment. Many respondents experienced barriers, including a lack of cancer care at local clinics and the distance traveled to receive cancer care. During treatment, too much paperwork and having to wait too long in the clinic for cancer care were the most frequently reported barriers. CONCLUSIONS: Treatment barriers influence AI/AN breast cancer survivors' social QOL. Mediating these barriers is crucial to ameliorating AI/AN survivors' disparities when accessing and completing cancer treatment and improving survivorship QOL. Cancer 2017;123:861-68. © 2016 American Cancer Society.

Indigenous people's experiences at the end of life.

OBJECTIVE: The primary purpose of this metasynthesis study was to explore the end-of-life experiences of Indigenous peoples by synthesizing the findings of qualitative research. METHOD: Sandelowski and Barroso's methodology for synthesizing qualitative research was used and included (a) a comprehensive search, (b) appraising reports of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Research team members guided this process. This team was multidisciplinary and included Indigenous and non-Indigenous researchers from Canada, Australia, New Zealand, and the United States. Following a comprehensive search, 2255 studies were reviewed and assessed against five inclusion criteria: (a) studies on the experiences of Indigenous populations (all genders, 18 + years of age) at the end of life, (b) studies published in English from any country, (c) studies using qualitative and mixed-methods designs, and (d) studies published between 1993 and 2013. RESULTS: Some 18 studies met the inclusion criteria, and their findings were synthesized. "Preparing the spirit" for transition to the next life was the overarching theme. "Preparing the spirit" occurred within the context of "where we come from." Processes involved in "preparing the spirit" were healing, connecting, and protecting; through these processes, "what I want at the end of life" was realized. Although not the focus of the metasynthesis, a significant finding was that the studies reviewed identified very clear barriers within healthcare systems and current healthcare provider practices to "preparing the spirit." SIGNIFICANCE OF RESULTS: The findings provide a beginning understanding of the end-of-life experiences of Indigenous peoples and a foundation for future research. More interpretive qualitative research is critical if palliative care services, the healthcare system, and healthcare providers are to reduce current barriers to "preparing the spirit" for the journey at the end of life.

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.

Findings from the native navigators and the Cancer Continuum (NNACC) study.

Native Navigators and the Cancer Continuum (NNACC) was a community based participatory research study among Native American Cancer Research Corporation, CO; Inter-Tribal Council of Michigan, MI; Rapid City Regional Hospital's Walking Forward, SD; Great Plains Tribal Chairman's' Health Board, SD; and Muscogee (Creek) Nation, OK. The project goal was to collaborate, refine, expand, and adapt navigator/community education programs to address American Indian communities' and patients' needs across the continuum of cancer care (prevention through end-of-life). The intervention consisted of four to six site-specific education workshop series at all five sites. Each series encompassed 24 h of community education. The Social Ecology Theory guided intervention development; community members from each site helped refine education materials. Following extensive education, Native Patient Navigators (NPNs) implemented the workshops, referred participants to cancer screenings, helped participants access local programs and resources, and assisted those with cancer to access quality cancer care in a timely manner. The intervention was highly successful; 1,964 community participants took part. Participants were primarily American Indians (83 %), female (70 %) and between 18 and 95 years of age. The education programs increased community knowledge by 28 %, facilitated referral to local services, and, through site-specific navigation services, improved access to care for 77 participants diagnosed with cancer during the intervention. Approximately, 90 % of participants evaluated workshop content as useful and 92.3 % said they would recommend the workshop to others. The intervention successfully increased community members' knowledge and raised the visibility of the NPNs in all five sites.

Enhancing life after cancer in diverse communities.

BACKGROUND: Although large numbers of cancer survivors exist in every community, including minority communities, there is a significant gap in knowledge about best practices for these patients. METHODS: The Community Networks Program, funded by the National Cancer Institute Center to Reduce Cancer Health Disparities, has developed and tested unique services for these communities. These programs have used community-based participatory research techniques under a framework of diffusion of innovation and communications theory. RESULTS: This article describes some specifically tailored interventions that may be useful to a wide range of providers working with the underserved. CONCLUSIONS: Enhancing life after cancer can be achieved in underserved communities by supplementing local resources.

Comparison of quality of life between Native and non-Native cancer survivors: Native and non-Native cancer survivors' QOL.

This paper compares quality of life (QOL) outcomes between Native American and non-Native cancer survivors. Native Patient Navigators helped Native cancer patients complete a 114-item QOL survey and access survivorship information available on the NACES website. The survey was modified from Ferrell et. al's QOL measure and assessed the four domains of cancer survivorship: physical, psychological, social, and spiritual. Findings from Native survivors were compared to Ferrell's findings. This is the first time that QOL outcomes have been compared between Native and Non-Native cancer survivors. Natives scored lower for physical and social QOL, the same for psychological QOL, and higher for spiritual QOL in comparison to non-Natives. Overall QOL scores were the same. Although this is the largest sample of Native cancer survivors reported in peer-reviewed manuscripts, these Native survivorship data are based on a self-selected group and it is unknown if the findings are generalizable to others.

Preliminary lessons learned from the "Native Navigators and the Cancer Continuum" (NNACC).

This community-based participatory research (CBPR) study was based on patient navigation (Navigator) among three original sites: Colorado, Michigan, and South Dakota. During 2010, the study added two sites: the Comanche Nation and the Muscogee (Creek) Nation (Oklahoma). The intervention includes 24-h of a Navigator-implemented cancer education program that addresses the full continuum of cancer care. The partners include agreements with up to two local Native American organizations each year, called Memorandum Native Organizations, who have strong relationships with local American Indians. Family fun events are used to initiate the series of workshops and to collect baseline data and also to wrap up and evaluate the series 3 months following the completion of the workshop series. Evaluation data are collected using an audience response system (ARS) and stored using an online evaluation program. Among the lessons learned to date are: the Institutional Review Board processes required both regional and national approvals and took more than 9 months. All of the workshop slides were missing some components and needed refinements. The specifics for the Memorandum Native Organization deliverables needed more details. The ARS required additional training sessions, but once learned the Navigator use the ARS well. Use of the NACR website for a password-protected page to store all NNACC workshop and training materials was easier to manage than use of other online storage programs. The community interest in taking part in the workshops was greater than what was anticipated. All of the Navigators' skills are improving and all are enjoying working with the community.

Online evaluation programs: benefits and limitations.

Patient navigation programs are increasing throughout the USA, yet some evaluation measures are too vague to determine what and how navigation functions. Through collaborative efforts an online evaluation program was developed. The goal of this evaluation program is to make data entry accurate, simple, and efficient. This comprehensive program includes major components on staff, mentoring, committees, partnerships, grants/studies, products, dissemination, patient navigation, and reports. Pull down menus, radio buttons, and check boxes are incorporated whenever possible. Although the program has limitations, the benefits of having access to current, up-to-date program data 24/7 are worth overcoming the challenges. Of major benefit is the ability of the staff to tailor summary reports to provide anonymous feedback in a timely manner to community partners and participants. The tailored data are useful for the partners to generate summaries for inclusion in new grant applications.

Formative Assessment to Improve Cancer Screenings in American Indian Men: Native Patient Navigator and mHealth Texting.

Cancer screening rates among American Indian men remain low, without programs specifically designed for men. This paper describes the Community-Based Participatory Research processes and assessment of cancer screening behavior and the appropriateness of the mHealth approach for Hopi men's promotion of cancer screenings. This Community-Based Participatory Research included a partnership with H.O.P.I. (Hopi Office of Prevention and Intervention) Cancer Support Services and the Hopi Community Advisory Committee. Cellular phone usage was assessed among male participants in a wellness program utilizing text messaging. Community surveys were conducted with Hopi men (50 years of age or older). The survey revealed colorectal cancer screening rate increased from 51% in 2012 to 71% in 2018, while prostate cancer screening rate had not changed (35% in 2012 and 37% in 2018). Past cancer screening was associated with having additional cancer screening. A cellular phone was commonly used by Hopi men, but not for healthcare or wellness. Cellular phone ownership increased odds of prostate cancer screening in the unadjusted model (OR 9.00, 95% CI: 1.11-73.07), but not in the adjusted model. Cellular phones may be applied for health promotion among Hopi men, but use of cellular phones to improve cancer screening participation needs further investigation.

Assessing the impact of patient navigation: prevention and early detection metrics.

BACKGROUND: The lack of comparable metrics to evaluate prevention and early detection patient navigation programs impeded the ability to identify best practices. METHODS: The Prevention and Early Detection Workgroup of the Patient Navigation Leadership Summit was charged with making recommendations for common clinical metrics specific to the prevention and early detection phase of the cancer care continuum. The workgroup began with a review of existing literature to characterize variability in published navigation metrics; then developed a list of priority recommendations that would be applicable to the range of navigation settings (clinical, academic, or community-based). RESULTS: Recommendations for researchers and program evaluators included the following: 1) Clearly document key program characteristics; 2) Use a set of core data elements to form the basis of your reported metrics; and 3) Prioritize data collection using methods with the least amount of bias. CONCLUSIONS: If navigation programs explicitly state the context of their evaluation and choose from among the common set of data elements, meaningful comparisons among existing programs should be feasible.

Community-based participatory development, implementation, and evaluation of a cancer screening educational intervention among American Indians in the Northern Plains.

The study describes the creation and implementation of a culturally appropriate cancer education intervention, and assesses its efficacy among American Indians in a community with documented cancer-related disparities. Education workshops were developed and conducted on three western South Dakota reservations and in Rapid City by trained community representatives. Over 400 individuals participated in the 2-h workshops. Participants answered demographic questions, questions about previous cancer screening (to establish baseline screening rates), and completed a pre- and post-workshop quiz to assess learning. Participants demonstrated significant increases in cancer screening-related knowledge levels. Surveys reveal that participants found the information of high quality, great value and would recommend the program to friends. Pre-workshop data reveals cancer screening rates well below the national average. Workshop participants increased their knowledge about cancer etiology and screening. This intervention may represent an effective tool for increasing cancer screening utilization among American Indians.