Colorectal cancer (CRC) is the second leading cause of cancer death for men and women in the United States. American Indians/Alaska Natives (AI/AN) have lower CRC incidence rates than both White and Black Americans. However, most of the available data come the from SEER (Surveillance, Epidemiology, and End Results) Program, which focuses on AI/AN populations in only certain geographic areas. Disproportionately higher rates of CRC incidence have been reported for AN and for AI in the Northern and Southern Plains.[3, 4] Diagnosis of CRC occurs later for AI/AN, and AI/AN experience higher CRC specific mortality compared to the US as a whole.[4–6] While incidence rates are declining for White Americans, they remain unchanged for AI/AN populations. Incidence rates and stage of CRC diagnosis are higher and survival is lower for AI/AN populations, even when adjusted for socioeconomic differences. Some reports show that CRC mortality rates are slightly decreasing for AI/AN men and women.[9, 10] However, CRC rates may be underestimated among AI/AN due to racial miscoding, death certificate misreporting, and population undercounting of the AI/AN population.[11–13] The regional variation, substantial misclassification of AI/AN race in many cancer registries, and poorer survival once diagnosed demonstrate that CRC burden in AI/AN may be underestimated and represents a significant public health problem for communities.
CRC incidence and mortality can be reduced substantially through screening, early detection, and timely treatment.[14–23] Unfortunately, in the US the CRC screening rate remains far below that for other screen-detectable cancers including breast and cervical cancer.[24–26] CRC screening rates also lag behind prostate cancer, a cancer for which there is inconclusive data for a screening mortality benefit. CRC screening disparities are significant among AI/AN; in many health systems, fewer than 25% of AI/AN of screening age are current with screening guidelines.[28–32]
Screening for CRC is an effective strategy for reducing incidence and mortality.[16, 20, 33] Screening can detect cancers at early stages when treatment is more effective (i.e., improving survival and reducing mortality), and can lead to detection and removal of pre-malignant growths, thereby reducing CRC incidence. Screening is low in the general US population, and lower still among AI/AN.[29, 32, 34] Lower screening rates among AI/AN are associated with later stage at diagnosis and poorer outcomes. Current female CRC screening rates for non-AI/AN are reported at 11.7% for Fecal Occult Blood Test (FOBT), 42% for sigmoidoscopy or colonoscopy, and 45.8% for combined endoscopy/FOBT. Screening rates for non-AI/AN males are 12.7% for FOBT, 44.6% for sigmoidoscopy or colonoscopy, and 48.2% for combined endoscopy/FOBT. For AI/AN men and women combined, these rates are 5.8%, 31.7%, and 34.4%, respectively. A number of well-established patient-level and system-level barriers to CRC screening exist, but few studies have investigated barriers to or facilitators of CRC screening specifically among AI/AN.
Reported barriers to CRC screening from other populations include the inconvenient or impractical nature of the tests,[36–39] the embarrassing or unpleasant nature of the tests,[38, 39] fatalistic cancer beliefs,[40, 41] and participants not wanting to know that something is wrong.[38, 42, 43] The practicality of some CRC tests, such as colonoscopy, also complicates patient efforts to get screened because of the multiple steps, time, cost, and preparation.[44–47] While there are not many studies specific to CRC screening among AI/AN, there may be important cultural impediments to CRC screening. In our previous work, interviews with AI/AN men and women showed that cultural barriers to CRC screening relate to lack of AI/AN health care providers or patient navigators, non-culturally-specific education, and lack of preventive care. Many Native communities also describe strong preferences for independence, pride and privacy, and may have fatalistic health beliefs that may hinder screening uptake.[45, 49–51] Language may also be a barrier in some areas, such as on the Navajo reservation and in Alaska where elders may primarily speak their own Native language.
This is important because in addition to socioeconomic factors, there may be culturally specific barriers and facilitators to screening, such as speaking a Native language or perceiving discrimination in medical settings. Our objective was to explore knowledge, perceptions, barriers, and facilitators to CRC screening among a community sample of AI living in the Midwest. Specifically, we explore younger (age 30–49 year old) AI men and women’s perceptions toward CRC screenings, existing barriers, and suggestions to promote education and screenings among the Native population. We focus on individuals who have not yet reached the recommended screening age because it is important to address CRC screening early. By concentrating our efforts on younger individuals, we can tailor educational campaigns to their specific needs in an effort to normalize screening and prepare people to get screened when they do reach that age. In addition, the views of younger AI may help us further understand what is preventing AI men and women of recommended screening age from getting screened.
Perceptions about CRC screening of individuals under age 50 vary in different cultural groups. Some populations question if earlier screening would be better for detection of CRC. Conversely, they also report fear, fatalism, and mistrust as barriers, rooted in lack of education, to screening causing the disease to go unnoticed. Very little research has explored CRC screening education prior to recommended age for screening[54, 55] and no research exists concerning CRC screening education among AI below recommended screening age.
We conducted focus groups with AI men and women age 30 to 49 to identify barriers to CRC screening. Using community-based participatory research qualitative analysis techniques developed by our team, our goal was to identify these barriers in order to develop and test a culturally tailored approach for enhancing CRC screening among AI receiving care in a diverse set of Indian Health Service (IHS), tribal, and urban safety-net primary care clinics in our region.