Cervical Cancer Knowledge and Screening Patterns in Zuni Pueblo Women in the Southwest United States

Advances in cervical cancer science enable the prevention of cervical cancer through HPV vaccines and minimally invasive and highly successful treatment through early detection of cervical cancer [15, 26]. These advances have also led to improvements in cervical cancer incidence and mortality for most US women, although cervical cancer disparities exist across a number of factors [1, 11]. Race is a persistent determinant of cancer outcomes, and in New Mexico (NM) and across the Southwestern US, American Indians (AI) experience a range of inequities [16, 17, 25, 26].

According to 2020 BRFSS data, the percentage of women aged 21–65 years old who have had a Pap test in the last 3 years (no hysterectomy) is as follows: 71.63% of American Indian/Alaska Native (AI/AN) women residing in NM, 71.85% of Non-Hispanic White women residing in NM, and 77.9% of US women of all races [22]. Based on Surveillance, Epidemiology, and End Results (SEER) data from 2015 to 2019, the age-adjusted incidence rate of cervical cancer for AI women in NM was 7.2 per 100,000 compared to 8.0 for non-Hispanic White women in NM (NM Tumor [13]). These same data report a cervical cancer mortality rate of 2.0 per 100,000 for AI women in NM compared to 1.7 per 100,000 for non-Hispanic White women in NM (NM Tumor [13]). While these statistics show a similar rate of cervical cancer screening between AI women and non-Hispanic White women in NM and a lower incidence rate of cervical cancer for AI women compared to non-Hispanic White women in NM, the inequity is captured in the greater cervical cancer mortality rate facing AI women. This inequity is also captured in the 2018 and 2019 National Health Interview Surveys and other reports by the CDC [1].

The experience of AI women in relation to cervical cancer screening is one that is understudied compared to the general population of women in the USA, and there are distinct barriers impacting cancer disparities within AI populations [25]. These include geographic, financial, and health system barriers ranging from substantial geographic distance to limited health care services, limited financial resources to facilitate access to health care (such as resources to travel to health care, ability to take time away from work), and bureaucratic barriers such as being able to make an appointment for specialty medical care [19, 25, 26].

Healthcare can make a difference in cervical cancer disparities. First, cervical cancer may be prevented by stronger uptake of the human papillomavirus (HPV) vaccine. Second, through regular Pap and HPV tests, cervical cancers may be identified at very early stages, where it is both easier and more effectively treated. The US Preventative Services Task Force (USPSTF) recommends that women aged 21–65 receive cervical cancer screening [24]. When women are screened in a timely and regular rhythm, preventive screening for cervical cancer is effective in decreasing both incidence and mortality of cervical cancer [15]. Bridging the AI/AN disparities in cervical cancer prevention, including the HPV vaccine, screening, and care, requires stronger evidence and understanding surrounding their experiences [2, 26].

Women and their experiences with cervical cancer screening, preventive medicine, and cancer treatment are culturally and contextually nuanced. Social and cultural norms may also be barriers to timely screening and treatment for cervical cancer. As cervical cancer is linked to sexual and reproductive health, stigma may be a barrier to promoting cervical cancer prevention, screening, and treatment. Specifically, literature shows that the linkage between cervical cancer and HPV leads to heightened stigmatization of women with cervical cancer [14, 20]. In qualitative research with AI/AN communities about cervical and breast cancer, women have reported that stigma can be a barrier to getting care and that screening itself requires people to make themselves vulnerable [9, 21]. Literature also suggests that beliefs around cancer and death can influence people’s willingness to participate in cancer screening [4, 9].

While most population science examines AI/AN health disparities by grouping all AI/AN Tribes together, the AI/AN population is not a monolith and Tribal differences need to be acknowledged and accounted for in cancer prevention plans [11, 16‐18, 25]. In this study, we contribute to the evidence base of cervical cancer screening knowledge among the Zuni people, who may have distinctly different, culturally derived knowledge of cervical cancer, which may be different from other AI Tribes. This study aims to examine the association between general cervical cancer awareness, cervical cancer risk factor knowledge, and cervical cancer screening patterns in Zuni Pueblo women.

This study provides important insights into cervical cancer screening knowledge and patterns in Zuni women. Over 75% of Zuni women reported having had at least one cervical cancer screening in their lifetime. This is a strong base to build from, as the literature suggests that awareness of cervical cancer and related screenings are linked to receiving future screenings [14]. A smaller percentage, approximately 55% of those who have ever received a screening (42% of all respondents in this survey), are up to date with cervical cancer screening guidelines. These patterns help provide information about where to target interventions. There should be specific outreach to the 25% of women who have never had a cervical cancer screening to explain the importance of the screening to identify cervical cancer at the earliest possible stage when it is most effectively and least invasively treatable. There should be a different approach for those women who have had a screening in the past but are not currently up to date.

This study was conducted during the COVID-19 pandemic, when there was a downturn in “elective” healthcare and cancer screening more broadly [5, 6]. For example, Zuni Comprehensive Health Center did not provide many primary care services during some of the most critical stages of the pandemic to protect public health. This had an impact on preventive care services. Again, our survey was conducted between October 2020 and April 2021, and during this time over one-third of our participants reported not having a regular provider. However, as healthcare facilities move forward at this stage of the pandemic to operate with fewer restrictions and closer to pre-pandemic routines, it will be important to note if the number of people without regular providers decreases as well.

This study provides further evidence that cervical cancer knowledge is linked to cervical cancer screening behaviors. For these Zuni women, having more knowledge about which factors increase the odds of cervical cancer is linked to having been screened for cervical cancer. Cervical cancer education intervention studies indicate that interventions which increase cervical cancer and screening knowledge improve screening behaviors [12, 14]. Interventions for and evaluations of cancer screening should be culturally tailored. Considering this evidence and our findings about cervical cancer knowledge held by Zuni women, cervical cancer education outreach may result in improving cervical cancer screening uptake for Zuni women. Taking a closer look at the individual cervical cancer knowledge items suggests some areas focus on in education interventions. While an education program should be holistic, there are some areas where there was greater room for knowledge, specifically medically reasonable risk factors. For example, while over 77% of respondents knew that if someone in their family had cervical cancer, it increased their odds of cervical cancer, a smaller percentage knew that if someone had given birth to 3 or more children (33%) and if someone had their first pregnancy younger than 17 years old (30%), it increased their odds of cervical cancer. These responses provide knowledge to build a community-tailored education intervention with the greatest potential for improving cervical cancer knowledge and screening for Zuni women.

While many of the demographic characteristics were not strongly linked to cervical cancer screening, it was not surprising that as women age, they are more likely to receive a screening. It is also noteworthy that younger women are statistically significantly more likely to have heard of HPV and the HPV vaccine, as the medical community has made major advancements in HPV knowledge and prevention in the last 20 years. While there is room for improvement, information about HPV and the HPV vaccine is reaching younger AI/AN women [10]. Hopefully, this pattern will result in promoting HPV and cervical cancer screening in these younger women. Our findings suggest that women of different generations will benefit from tailored education interventions which consider age-specific cultural norms related to reproductive health. This education should focus on HPV education for at-risk populations including education about HPV types, which types are covered by the current vaccine, and to discuss current CDC recommendations [24].

The limitations of this study to consider include that the survey is cross-sectional, so specific causal claims cannot be made, and the sampling strategy was not a strict random sample, limiting the generalizability. A true strength of this study is its focus on Zuni women. While this study makes a contribution to a greater understanding of AI/AN cervical cancer patterns, AI/AN health scholars should honor the unique culture and context of Tribes and apply the takeaways from this study in consideration of specific Tribes’ and communities’ distinct cultures and needs. Finally, this study was conducted during the COVID-19 pandemic, so while it captures distinct patterns about cervical cancer screening, the relatively lower rates of cervical cancer screening compliance may have been affected by the reduction in access to care due to pandemic precautions in the healthcare system and by individuals.

This study builds the body of evidence about cervical cancer knowledge and screening in Zuni Pueblo. It offers concrete areas upon which to build interventions to improve cervical screening compliance. It reveals both the strong foundations of knowledge within Zuni and provides areas where education efforts may make the most impact. There is great potential to improve cervical cancer knowledge and screening which will reduce the burden of cervical cancer in Zuni women.