FormalPara Key Points

  • Lung cancer is a leading cause of cancer death among Northern Plains American Indians.

  • Lung cancer can be detected through screening using low-dose computed tomography (LDCT).

  • Participation in LDCT is low. An intervention for American Indian (AI) communities, healthcare providers, and clinic staff was implemented in four regions with high AI populations in South Dakota.

The US Census documented 74,975 American Indians (AIs) living in South Dakota, USA [1]. Monument Health Rapid City Hospital (formerly known as Rapid City Regional Hospital), South Dakota, is the secondary and tertiary oncology care provider to 60,000 adult AIs in western South Dakota, including Pine Ridge Oglala Sioux, Cheyenne River Sioux, Rosebud Sioux, and AIs from various Tribes living in Rapid City. According to the Index of Medical Underservice [2], the entire population of western South Dakota is medically underserved [3].

In 2002, the Walking Forward Program (WFP) was established to address high cancer incidence and mortality rates among Northern Plains AIs. The program, emphasizing comprehensive navigation in the community and the clinic, community cancer education, increased access to cancer screening and early detection, and enrollment in clinical trials, led to multiple projects spanning two decades. The projects were developed from meetings between Dr. Daniel Petereit, a non-Hispanic White (NHW) radiation oncologist, and Tribal council leaders.

Starting in 2000, Dr. Petereit drove to local reservations multiple times each year, over distances averaging a 280-mile roundtrip, to present his concerns about excessive and late-stage cancer at the time of diagnosis among the AI community to the respective Tribal health leaders (e.g., multiple separate sessions with both Pine Ridge Tribal Health Council and Rosebud Tribal Health Council).

Dr. Petereit and the Tribal leaders discussed the problems of low participation in cancer screening programs and the barriers many AI patients experienced in accessing quality and timely cancer care. The partnership between Dr. Petereit and the Tribal leaders was expanded to include community leaders and Indian Health Service (IHS) physicians. During those visits, Dr. Petereit demonstrated commitment to and respect for community leaders and physicians, while the long commute to reservations provided him with an understanding of the significant distance and financial barriers that patients face.

Collaboration between Tribal leaders, IHS, community leaders, and Dr. Petereit resulted in a 2003 awarded study that was culturally respectful and designed to increase early detection breast cancer screening at Pine Ridge, Cheyenne River, and Rosebud Reservations and among AIs living in Rapid City. After years of establishing a strong foundation, patient recruitment began [4].

In an outreach program that began in 2003, community research representatives (CRRs) (referred to as patient navigators in other settings) reached out to community members who were eligible for breast health screening. From 2003 to 2023, there were statistically significant results: (1) an increase in breast cancer screening rates, (2) earlier-stage determination of breast cancer at the time of diagnosis, (3) improved breast cancer survivorship and quality of life, and (4) lower breast cancer mortality in Pine Ridge and Rosebud Reservations in particular.

There are complex reasons for low participation in cancer screening and higher rates of late-stage cancer diagnosis among AI populations. These include systemic social determinants or drivers of health—such as geographic location, poverty, inequities in resources and opportunities, inadequate health insurance, culturally unresponsive healthcare, colonization, cultural genocide, historical trauma, systemic racism, decreased access to timely screening, and decreased access to high-quality primary and specialty treatment [5]. Since 2003, the WFP has screened over 2700 AIs in South Dakota for breast cancer, enrolled over 5000 individuals in cancer research studies and clinical trials, and addressed multiple local issues, including the rollout of tobacco cessation programs and conducting genetic studies to understand how and why AIs experience more side effects from external beam radiation than other racial groups [6]. Between 2009 and 2012, the WFP also supplemented the care of more than 1900 cancer patients and survivors through patient navigation services provided by CRRs [7].

Lung Cancer in the Northern Plains AI Population

Over the years, the WFP study team has closely tracked both national and local data for specific cancers. Lung cancer has been a priority due to the high incidence of smoking among AIs and cancer data that indicate substantial differences from the general US population and statistically significant differences by geographic region. AIs living in the Northern Plains (North Dakota, South Dakota, and Nebraska) continue to have excessive incidence of lung cancer [8]. Lung cancer incidence among adult male and female AIs living in the Northern Plains is elevated relative to both Whites living in that region and AIs living in other regions. Over half of all Northern Plains AI lung cancers are diagnosed at later stages [8, 9]. The lung cancer incidence is 23% higher among AI men than women [9]. AI men in the Northern Plains have a lung cancer incidence rate of 109.3 per 100,000, compared to 66.9 per 100,000 among White men living in the Northern Plains [9], while the rate for AI women is 102 per 100,000, compared to 53.3 per 100,000 for White women living in the same area. The relative risk rates are 1.63 and 1.92 for AI men and women, respectively [9].

Between 2000 and 2009, AIs had the highest lung cancer mortality rates in the country (95.0/100,000, compared to 55.3/100,000 for Whites) [10]. Data collected between 2009 and 2015 at the Monument Health Cancer Care Institute in Rapid City revealed the same trends for non-small cell lung cancer [11]. Both Whites and AIs in South Dakota are more likely to present with stage IV diseases than earlier stages, although the incidence of late-stage presentation is higher for AIs. Smoking is the leading cause of lung cancer. The average rate of smoking among adults across the United States is 12.5%, while in South Dakota, 15.3% of the adult population of the state smoke, and 42.3% of South Dakota AI adults smoke [12, 13].

National Lung Cancer Screening Trial Low Dose Computed Tomography (LDCT) tests have been recommended as the standard for lung cancer screening by the US Preventive Task Force [14]. However, LDCT screening is underutilized, and screening rates are low for all eligible adults living in South Dakota. Only a few IHS clinics even own the equipment, or they do not have the staff to conduct LDCT. There are multiple reasons for low LDCT participation among eligible adults, including limited awareness of screening eligibility and the value of LDCTs, geographic distance to LDCT imaging centers, underlying systemic racism, lower likelihood of LDCT recommendation by primary care providers, and lower likelihood of screening among high-risk individuals owing to barriers and mistrust. Additionally, the AI community has limited and fragmented access to medical care; among those few with private health insurance, most do not know how to use it because their care has been provided by IHS (but IHS is not insurance).

The WFP LDCT Study

In 2018, the WFP initiated a study designed to increase lung cancer screening for eligible participants (see Table 41.1 for LDCT eligibility requirements) [14]. The study explored whether provider and/or individual intervention would increase LDCT lung cancer screening among high-risk smokers living in western South Dakota. The study was approved by Institutional Review Boards (IRBs) at Avera Health Systems and by the AI Tribal populations involved in the study (e.g., Pine Ridge IRB, Rosebud IRB).

Table 41.1 Eligibility for LDCT screening
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WFP staff created two interventions: one for healthcare providers and clinic staff (provider intervention group) and the other for high-risk current or past smokers (community intervention group). Program evaluation for both used survey data and LDCT screening data. LDCT screening was tracked across four frontier study regions—three interventions and one control, all with high proportions of AI residents. Each region received a distinct intervention: Black Hills and Rapid City received provider intervention, residents of the Pine Ridge region received community intervention, those in the Rosebud region received both provider and community interventions, and those in the Cheyenne River were treated as observation only and received no intervention.

The provider intervention consisted of a 45- to 60-minute prerecorded PowerPoint presentation on LDCT screening, eligibility, treatment, and billing and coding and was facilitated by a WFP CRR. It was narrated by a fellowship-trained radiologist with additional LDCT training (coauthor DKW). Healthcare providers received certified education credits upon completing the intervention. Participants completed a pre-education survey, and 6 months later, they were mailed/emailed a follow-up survey to document posteducation LDCT referrals.

The community intervention used a PowerPoint presentation developed and presented by WFP CRRs either one-on-one or in small groups. The presentation included content on lung health, smoking cessation, an introduction to an online resource, patient navigation, LDCT eligibility, and treatment of lung cancer. Refreshments and $20 stipends were provided for participants’ time and travel. The CRRs provided lung cancer navigation, including travel assistance to help overcome geographical and logistical barriers to obtaining screening.

WFP collaborated with imaging centers to track quarterly LDCT completion numbers. Patients were asked to complete an intake survey when they arrived for their LDCT. The survey included anonymous demographic data and reasons for obtaining an LDCT.

A total of 21 provider education intervention workshops were conducted between June 2018 and June 2021 in three intervention sites. Table 41.2 describes the screenings undertaken at each site. A total of 131 participants (nurses, social workers, medical assistants, and billing and coding staff) completed the sessions. Workshop size ranged from three to 26, and providers’ experience ranged from zero to 60 years (average 14.7 years). During the six-month follow-up survey, 47 providers recalled attending the LDCT workshop, and of those, 31 (63%) referred at least one patient for LDCT (p < 0.05, Fisher exact test). Of those making referrals, 18 (51%) reported referring between one and five patients, ten (28.6%) referred six to ten patients, two (5.7%) referred 11–15 patients, and one provider reported making over 16 referrals.

Table 41.2 LDCT screenings by intervention group
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Out of the 306 community education intervention session attendees surveyed at the six-month follow-up, 124 (39.6%) reported having a medical appointment for something other than lung cancer screening since attending the education workshop. At that appointment, 40 (32.3%) reported that their provider recommended LDCT, and of those, 30 (75%) reported getting an LDCT (p < 0.05, Z = 4.75). Participants provided a variety of reasons for not getting an LDCT, including the lack of provider recommendation, not feeling at risk for lung cancer, distance to screening facility, travel cost, and fear of what the screening might reveal. Additionally, 69 participants reported contacting their provider and asking about LDCT lung cancer screening. In response to these requests, eight (2.6%) received a referral for LDCT and two (0.7%) reported completing the LDCT. When surveyed at the beginning of the community education sessions, 2.4% of community participants already had an LDCT; at the six-month follow-up assessment, this increased to 9.6%.

Between July 2018 and June 2022, 2829 AI patients completed LDCTs at screening centers participating in this investigation (see Fig. 41.1), with an increase of 1066 LDCTs in year 4 of the study compared to the 2017 baseline (i.e., a 90.9% increase). The majority of LDCTs were taken by residents of the Rapid City and Black Hills region, where LDCT screening was accessible (see Table 41.2). These findings underscore the importance of distance as a barrier to LDCT screening, with 22% reporting having to travel between 100- and 400-mile roundtrips to and from a screening center. The cancer burden among AI populations is exacerbated by personal and social factors, such as lower socioeconomic status, inadequate health coverage, decreased prevention and screening, and mistrust of the healthcare system [15,16,17]. Provider recommendation was the most common reason given for obtaining an LDCT. Other reasons included personal recommendations, information from the program’s educational sessions, and exposure to mass media.

Fig. 41.1
A bar chart comparing the number of L D C Ts completed by year, with years 1 through 4 represented. The chart indicates a significant increase in the number of L D C Ts completed in year 4, which is the highest bar at 1706. The baseline starts at 640.

LDCTs completed by study year

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Overall, a lack of information about LDCT presented in a culturally appropriate manner by trusted providers and clinic staff was the major barrier to screening. On the other hand, a facilitator of screening was the WFP and clinic staff who are local residents. The presence of AI staff living in the communities they serve significantly increased the likelihood of LDCT screening uptake. The investigating team has two decades of experience establishing trusting relationships both within the community and with the IHS. An ongoing challenge is that IHS does not cover the costs of LDCTs conducted off-reservations, and most IHS facilities do not offer them. With supplemental foundation funding, in the WFP study, it was possible to pay for off-reservation LDCTs and provide participants with a stipend to cover travel costs.

Recommendations for future programs include the following:

  • Increasing education on and awareness of the need and benefits of LDCT and processes to improve billing for LDCT for healthcare providers.

  • Improving culturally appropriate education about LDCT throughout AI communities.

  • Building relationships of trust.

  • Finding alternative funding to support LDCT conducted off-reservation.

  • Increasing travel support for personnel.