Linda U. Krebs

Navigation as an Intervention to Eliminate Disparities in American Indian Communities

OBJECTIVES To identify the role of patient navigation in decreasing health care disparities through an exemplar of a successful patient navigation program for American Indian populations living in the Northern and Southern Plains of the United States. DATA SOURCES Published literature and data from the Native Navigators and the Cancer Continuum study. CONCLUSION Native Patient Navigators successfully collaborated with local American Indian organizations to provide cancer education through a series of 24-hour workshops. These workshops increased community knowledge about cancer, influenced cancer screening behaviors, and increased the visibility and availability of the navigators to provide navigation services. IMPLICATIONS FOR NURSING PRACTICE Reaching those with health care disparities requires multiple strategies. Collaborating with patient navigators who are embedded within and trusted by their communities helps to bridge the gap between patients and providers, increases adherence to care recommendations, and improves quality of life and survival.

A 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 [1]. 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.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.

Sexual health during cancer treatment.

Managing the sexual health of cancer patients has become an increasingly important component of providing comprehensive cancer care. Young adults, those from late adolescence to age 29–39, depending on the author and definition, remain a unique challenge as sexual health is intertwined with the critical developmental tasks of gaining sense of self and one’s personal identity, forming healthy intimate relationships and accomplishing important milestones in the transition from child to mature adult. Unfortunately, much of what is known about this population is gleaned primarily from survivors of childhood cancer [1].

Toward an mHealth Intervention for Smoking Cessation

The prevalence of tobacco dependence in the United States (US) remains alarming. Invariably, smoke-related health problems are the leading preventable causes of death in the US. Research has shown that a culturally tailored cessation counseling program can help reduce smoking and other tobacco usage. In this paper, we present a mobile health (mHealth) solution that leverages the Short Message Service (SMS) or text messaging feature of mobile devices to motivate behavior change among tobacco users. Our approach implements the Theory of Planned Behavior (TPB) and a phase-based framework. We make contributions to improving previous mHealth intervention approaches by delivering personalized and evidence-based motivational SMS messages to participants. Our proposed solution implements machine learning algorithms that take the participants demographic profile and previous smoking behavior into account. We discuss our preliminary evaluation of the system against a couple of pseudo-scenarios and our observation of the systems performance.

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.

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.

Cultural Roles of Native Patient Navigators for American Indian Cancer Patients

The purpose of this opinion article is to clarify cultural roles Native Patient Navigators (NPNs) perform in providing cancer support. NPNs, who are American Indian (AI), provide many unique services to indigenous patients who are undergoing treatment (radiation, chemotherapy, surgery, adjuvant therapy) for cancer. AIs experiences of cancer often are complex, requiring a team that not only provides comprehensive, quality cancer care, but also provides care that incorporates cultural norms and beliefs. NPNs are an essential component of AI cancer patients’ recovery and healing. American Indians in the USA have distinct and significant geographic rates of cancer incidence and mortality, whereas White rates remain homogeneous (1–5). Indigenous people living in Alaska and the Northern (e.g., ND, SD, NE, WI, MT, MI) and Southern Plains (e.g., OK, TX, KS) typically have elevated age-adjusted cancer incidence and mortality rates. The substantial progress in reducing cancer death rates experienced by Whites over the past two decades has not been experienced by AIs (6); cancer mortality rates remain the same or more commonly are increased from previous data (1–5). AIs continue to have the poorest 5-year relative survival from cancer in comparison to all other ethnic and minority groups in the US (66.7% for non-Hispanic Whites vs. 59.0% for AIs) (7, 8). Anecdotal data from Canadian First Nations or Aboriginals, New Zealand Maoris, and Australian Aboriginals report similar geographic variability in their respective countries. According to Harold Freeman, MD, the “father” of patient navigation, navigators guide patients through and around barriers in the complex health care system, to help ensure timely diagnosis and treatment (9) of cancer and other illnesses. However, the term “navigator” has varied meanings within healthcare systems, resulting in some confusion. As an example, the federal Affordable Care Act (H.R. 3590) (10) refers to navigators as trained individuals who “establish relationships with employers and employees, consumers (including uninsured and underinsured consumers), or self-employed individuals likely to be qualified to enroll in a qualified health plan” (11). Thus, under the Act, a navigator functions mainly as an insurance broker rather than one who helps patients overcome barriers to accessing and using a specific healthcare system or treatment plan/program. Within many settings, Community Health Workers, who are culturally, well-respected members of underserved populations, help bring these community members to the doors of the clinic or healthcare facility. NPNs function similarly to Community Health Workers; however, they cross the threshold of the clinic and continue providing cultural support within clinical departments (i.e., they cross boundaries). NPNs are familiar with varying tribal beliefs about health and illness and can establish a rapport and trust with patients that allow them to share their fears and spiritual practices necessary to achieve health and healing. NPNs provide services and support that are unlikely to be addressed by other hospital staff and they need to be paid lay professional positions. Ideally, the NPN and the hospital collaborate to provide the optimal healing environment for the AI patients.

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.

Abstract IA10: Challenges in addressing cancer health disparities in Native American communities

Brief Overview of Demographics and Risk Factors: There are more than 760 federally and state-recognized American Indians/Alaska Natives (AI/ANs) tribes in the US.1 Of those AI/ANs responding to the 2010 Census, 41% lived in the West and the majority (78%) lived in urban and rural areas or in states that do not have a federal Reservation.2 AI/ANs have daily behaviors and co-morbidities that increase their risks for cancer. They are more likely to be obese, use commercial tobacco, and have diabetes or high blood pressure. They also have long experienced lower health status in comparison with other US populations. AI/ANs born in 2011 have a lower life expectancy than all US populations (72.6 years vs. 77.8 years).2 Their poverty level is nearly twice that of the overall US population; only half as many having health insurance. When compared to other populations, AI/ANs are more likely to have a lower socioeconomic status and live in poverty, leading to less access to cancer prevention and screening services. Additionally, 20% of AI/ANs have not completed high school as opposed to only 8% of non-Hispanic Whites. Not completing high school has been associated with unhealthy and risk taking behaviors.3 The Indian Health Service (IHS) reported that cancer screening rates for AI/ANs were significantly lower in comparison to the overall US population with only 59% receiving cervical screening, 45% breast screening and 33% receiving colorectal screening, leading to increased risk of late diagnosis and decreased survival from cancer.2 Excerpts from “Native American Cancer Education for Survivors” (NACES): Native American Cancer Education for Survivors” (NACES) is the largest AI cancer survivorship database, education and support program in the US, with almost 900 survivors. NACES is a cancer education intervention designed to improve the Quality of Life (QOL) of cancer survivors by increasing knowledge and informed choice using innovative, tailored, web-based technology. The website includes a QOL survey, culturally appropriate and scientifically accurate content based on the Medicine Wheel (physical, mental-emotional, social and spiritual health), video excerpts from almost 90 AI survivors, sample questions to ask providers, and other interactive information. It is organized as a QOL Tree with information written at reading grade levels 5-7, and is based on AI survivors sharing their cancer-related stories throughout the education materials. Native Patient Navigators (NPNs) assist cancer survivors to effectively use the website and complete a QOL survey. This survey was adapted and culturally tailored from Ferrell9s QOL survey initiated at the City of Hope. In 2013, 75 items, mostly NIH PROMIS® items, were added. As of September 2014, 890 AI cancer survivors completed the survey. Findings include: Most (n=710; 79.8%) are female, 46% have high school or less education, more than half (54.6%) are full-bloods, and almost half (47.6%) were diagnosed with cancer prior to age 50. About 1/3 (35.7%) travel 200 or more miles one way to access cancer care and because of rural road conditions and other geographic issues, almost half (48.1%) travel more than 2 hours one way to access such care. More than 1/3 (37.4%) had difficulties getting into cancer treatment. These data differ greatly from NCI published findings of older age at diagnosis, living within a reasonable distance from cancer care services and access to treatment.4 5 Affordable Care Act (ACA): IHS offers basic clinic services until there is a cancer diagnosis. Then patients are referred through Contract Health Services (CHS) out of the IHS system to private health providers. When there are not enough CHS funds available in a contract year, patients cannot be referred until the next year begins. The current system typically results in people returning to their home reservation for 3-6 months to re-establish “residency”, then they are placed on the CHS priority / waiting list to be referred elsewhere for cancer care. This means that AIs must return to the reservation to seek care. However, the ACA, should eliminate such obstacles to accessing timely cancer services. Those AIs who have health insurance receive care in sites determined by their healthcare plans. Those without health insurance and not living near an IHS clinic access health care the same as others in poverty, often not receiving healthcare until an emergency. For many reasons, few receive health care at public institutions. Contrary to popular belief, AIs living in urban areas do not have easier access to healthcare services in comparison to Reservation-based AIs. While almost 2/3 of AIs live in urban areas, only 2% of the total IHS budget is allocated to urban AI clinics, affecting access to cancer screening and early detection programs. Those who seek public screening services often experience fragmented care due to lack of a primary care provider, delayed or lost results reporting or insufficient or delayed follow-up care of suspicious findings. Because the ACA allows AIs the option for exemption from obtaining health insurance, many will rely solely on care through IHS. However, due to major reductions in the IHS budget, tribes and Indian organizations are referring AIs for private insurance through the ACA to assure that they receive healthcare. Because private health insurance is not the norm for AIs, many are unfamiliar with how to use it and are unclear how to access health services such as routine cancer screenings. Access to Technology: In 2012, NACR and its collaborators (Muscogee (Creek) Nation, Rapid City Regional Hospital9s Walking Forward Program, Intertribal Council of Michigan) had their Native Patient Navigators (NPNs) administer a short survey on access to and use of technology to AIs (n= 306). Two thirds of respondents were female, 64% were between 31 and 64 years of age and 68.9% had less than a college education. About 2/3 had positive responses to the use of cell phones, with 76% having a cell phone, 66.6% currently using text messaging and 74.8% willing to receive and respond to about 4-6 health-related texts per day. Many of the elders used Facebook to stay in contact with their grandchildren. Cell phone towers on Reservations are increasing; in 2014, 85% of Reservations have cell phone coverage. Although the majority of AIs now have cell phones, many do not know how to use common features. The need for “cultural” Native Patient Navigators: AIs experience barriers to accessing health care due to socioeconomic and cultural issues as well as historical trauma, even when it is second and third generation.6 7 NPNs help patients understand healthcare information by translating it into terms that are more comfortable and easily understood. They know how to address historical issues unique to tribal members, varying communication patterns and spirituality practices that may impact contemporary medical practices. They provide support and referrals to education programs, resources and cancer screenings and improve and enhance AI patient outcomes through recognizing and integrating culture in overall healthcare. References: 1 US Census Bureau, (2012). The American Indian and Alaska Native Population: 2010 (based on the 2010 Census Redistricting Data (Public Law 94-171) Summary File). In: Commerce USDo, editor. Washington, DC. 2 Indian Health Service DHHS. (2012). Indian Health Service. IHS Fact Sheets. In: http://www.ihs.gov/publicaffairs/ihsbrochure/disparities.asp. 3 DHHS, Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report, CDC Health Disparities and Inequalities Report—United States, 2013, Supplement, volume 62, number 3, November 22, 2013, page 9 4 Howlader N, Noone A, Krapcho M, Neyman N, Aminou R, Waldron W, et al. (eds). SEER Cancer Statistics Review, 1975–2009 (Vintage 2009 Populations), National Cancer Institute; Bethesda, MD, http://seer.cancer.gov/csr/1975_2009_pops09/, based on November 2011 SEER data submission, posted to the SEER web site, April 2012. 5 de Moor JS, Mariotto AB, Parry C, Alfano CM, Padgett L, Kent EE, Forsythe L, Scoppa S, Hachey M, and Rowland JH. Cancer Survivors in the United States: Prevalence across the Survivorship Trajectory and Implications for Care. Cancer Epidemiol Biomarkers Prev. 2013 Apr;22(4):561-70. 6 Harjo, Lisa, Burhansstipanov, Linda, Lindstrom, Denise, Rationale for “Cultural” Native Patient Navigators in Indian Country. Journal of Cancer Education. (online June 2014, in print summer 2014) Doi 10.1007/s13187-014-0684-0 7 Cutler M (n.d.) Multigenerational trauma: behavior patterns in cultures. Retrieved from http://edweb.boisestate.edu/instituteforthestudyofaddiction/pp/Historical_Trauma_and_Grief.ppt on July 2014 Citation Format: Linda Burhansstipanov, Linda U. Krebs, Lisa D. Harjo. Challenges in addressing cancer health disparities in Native American communities. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr IA10.

A Mobile Survey Tool for Smoking Dependency Among Native Americans

Smoking and tobacco related cancers are very common among Native Americans. Gathering information during different phases of smoking cessation can help us understand different factors that may work during smoking cessation. In this paper, we will present a survey system designed to collect data for several phases of smoking cessation. We designed and developed a survey system that helps researchers to collect data from people who are going through different phases of smoking cessation. We evaluate this system from the experiences of end users and by generating reports.