Abstract
Background
Native Americans from the Northern Plains have the highest age-adjusted cancer mortality compared to Native Americans from any other region in the U.S.
Purpose
This study examined the utilization and determinants of cancer screening in a large sample of Native Americans from the Northern Plains.
Methods
A survey was administered orally to 975 individuals in 2004â2006 from three reservations and among the urban Native American community in the service region of the Rapid City Regional Hospital. Data analysis was conducted in 2007â2008.
Results
Forty-four percent of individuals reported ever receiving any cancer screening. Particularly low levels were found in breast, cervical, prostate, and colon cancer screening. In multivariate analyses, the strongest determinant of receiving cancer screening overall or cancer screening for a specific cancer site was recommendation for screening by a doctor or nurse. Other determinants associated with increased likelihood of ever having cancer screening included older age, female gender, and receiving physical exams more than once a year. Increased age was a determinant of breast cancer screening and receiving physical exams was associated with cervical cancer screening.
Conclusions
Cancer screening was markedly underutilized in this sample of Native Americans from the Northern Plains. Future research should evaluate the potential for improving cancer screening.
Introduction
Cancer is the second-leading cause of death among Native Americans aged >45 years.1 While all other racial/ethnic groups experienced a decline in cancer death rates from 1975 to 2004, mortality trends for Native Americans have not changed.2 This suggests that improvements in cancer-related health outcomes achieved in the past 3 decades are not reaching this vulnerable population. Ethnicity-specific data explaining this disparity are lacking, but it is known that early detection and treatment for cancer are generally underutilized in minority and medically underserved populations.3 Native Americans residing in the Northern Plains have the highest age-adjusted cancer mortality rates compared to Native Americans residing in other regions in the U.S.4 Among cancers for which effective screening tests exist, this group has mortality rates that are up to 80% higher than those in the general U.S. population.1 Native Americans from the Northern Plains are also more likely than non-Native Americans in the same region to present with cancer at an advanced stage.5,6
Addressing disparities in cancer outcomes among Native Americans poses challenges in that regional, linguistic, and cultural variation exist among tribes not only with respect to what approaches may be most effective to reduce cancer mortality, but also in the actual rates and nature of cancer mortality disparities themselves (i.e., there is no one-size-fits-all solution).1,4 While all tribes may face some common barriers that lead to disparities in cancer screening and mortality outcomes, other barriers may differ depending on the relative importance of various cultural and regional sociodemographic opportunities and resources. Examination of barriers facing specific tribes/regional populations ultimately increases understanding of how different racial/ethnic groups may behave across a wide variety of environmental contexts.7 More importantly, it also highlights that an average rate across a broad racial/ethnic category may be meaningless for both policy purposes and targeted outcomes improvement efforts when there is wide variation across outcomes, cancer screening behaviors, and barriers.8,9 Examination of cancer screening determinants in Native American populations that receive health care through the Indian Health Service (IHS), in particular, contributes to understanding how disparities arise based on factors other than insurance, as these individuals all have access to primary care and contracted specialty services that are available at no cost to the patient.10
Information about cancer screening among Native American populations is limited, particularly in the Northern Plains area where relatively high cancer mortality rates have been observed. Prior studies in this population have documented a high proportion of risk factors for cancer such as smoking,11 heavy alcohol consumption,12 and obesity.13,14 While no studies of cancer screening have been performed in general Northern Plains Native American populations, random chart review studies of women from this region with diabetes and without diabetes have found the probability of undergoing cervical and breast cancer screening to be 26% to 45%.15,16 Additionally, there is no information available about the determinants of low cancer screening rates among Northern Plains Native American populations, even though this information is critical for informing targeted interventions that seek to improve cancer screening rates.
This study examines the utilization and determinants of cancer screening in a large sample of Native Americans from the Northern Plains using a cross-sectional study design. It focuses specifically on cancer knowledge and access barriers, including resource availability and healthcare utilization.
Methods
Sample and data collection
Data were used from the Walking Forward Community Survey. IRB approval was obtained from the appropriate institutions including IHS and tribal health boards.
Data were collected in 2004â2006 on three reservations and among the urban/Rapid City Native American community in the service region of the Rapid City Regional Hospital. Recruitment initially used a stratified sampling procedure that was developed using gender, age and area of residence information from the Census 2000 population data. Due to the large geographic and low population density of the area surveyed and the cultural importance of family relationships between tribal members and tribal leadership, sampling methods then changed to include nonrandomized methods.17 In the final sample, 22% of participants were recruited via randomized methods (i.e., the interviewer attempted to recruit every other individual that visited an information booth at a public event), 54% were recruited from a convenience sample, 23% were recruited from the extended family of the interviewers, and 1% were asked to complete the survey due to key positions they held in their respective communities.
Eligible participants were aged â21 years and were enrolled tribal members. They received $20 for participation. Trained interviewers who were enrolled tribal members administered the survey orally. 984 individuals completed the survey and 99% (975) answered the question about screening. Compared to data in this population from the 2000 Census18, the final sample was more educated (57% vs 41%â42% with more than a high school education) and more female (61% vs 50%â51%). All individuals who completed the survey were eligible for periodic cancer screening according to the American Cancer Society Screening Guidelines.19
Survey and Variables
The Walking Forward community survey was developed using a community-based participatory research (CBPR) methodology.20 Designing the instrument involved collaboration among project staff, research consultants and Native American panels from each of the four participating Native American communities (Pine Ridge/Oglala Sioux, Cheyenne River Sioux, Rosebud Sioux, and the Rapid City Native American population). The process began with the research team identifying from the literature several domains associated with understanding cancer careârelated behaviors and barriers in this population. Consultants helped define the survey focus and guided the construction of items and response formats. Focus groups were held in which the questions were reviewed for cultural appropriateness, clarity of wording, and consistency of interpretation. The survey interview questions and protocol were completed in late 2003 and subsequently presented for tribal and IHS approval. Following receipt of tribal resolutions and letters of support, final approval was granted in mid-2004.
The final orally administered survey consisted of 65 questions. Questions asked about demographics and logistics (e.g., tribal affiliation, transportation and phone access), personal medical history (e.g., medical conditions, frequency of physicals, problems getting medical care), knowledge of cancer and clinical trials, perceptions and beliefs about cancer, and future choices and actions regarding cancer screening and treatment.
Receipt of cancer screening, the primary dependent variable, was assessed by response to a question that asked, âHave you ever had a screening to test for cancer?â If participants answered yes, they were asked, âFor what kind of cancer?â American Cancer Society guidelines for age in which to begin cancer screening were used to construct variables for specific screening sites as follows: cervixâwomen aged â21 years; breastâwomen aged â41 years; prostateâmen aged â51 years; and colonâeither gender aged â51 years.
Sociodemographic variables included age, gender, residence, places receiving health care during the past 12 months, number of people personally responsible for, education and transportation and phone access. Healthcare questions asked about the presence of a medical condition requiring regular visits, frequency of physical check-ups, first place seeking medical care when sick, one-way travel distance to regular healthcare provider, how medical bills are paid, and whether a doctor or nurse ever recommended cancer screening.
Cancer knowledge/cancer health literacy was constructed by summing the number of correct responses to three questions that assessed knowledge that: âCancer is a name for about 100 different diseases,â âA cancer screening test is a medical test that looks for cancer,â and âThe chances of curing cancer are better if the cancer is found and treated early.â
Statistical Analysis
Data were analyzed in 2007â2008 using Stata version 10.0. Using logistic regression, ORs and 95% CIs were calculated for all individuals answering the âever had screeningâ question. All variables were included in the multivariate analysis: demographics, cancer knowledge questions answered correctly, transportation and access, travel distance, payor of medical bills, first place seeking medical care, the presence of a medical condition requiring regular visits, frequency of physical exams, and a doctor or nurse recommending cancer screening.
Because the sample sizes were smaller when examining by cancer site, a forward selection procedure was used to construct models for having received cancer screening for specific sites. Variables were included if significant at p< 0.15. Final models included age, gender, education level, frequency of physical exams, and a doctor or nurse recommending cancer screening.
For all models, likelihood tests were conducted to determine the significance for groups of indicator variables. Results were considered significant at p< 0.05.
Results
Cancer screening utilization and determinants
Forty-four percent of respondents reported ever having any cancer screening (Table 1). Breast cancer screening was reported in 51% of the eligible sample versus 71% in the general population and 50% of the eligible sample reported cervical cancer screening versus the 79%â85% as expected by general population numbers.21 Marked differences also were reported in receiving prostate cancer screening (26% vs 54%) and colorectal cancer screening (17% vs 52%) in the sample versus the general population.21 Only 29% of the sample reported that a doctor or nurse had ever recommended cancer screening.
Table 1. Sample characteristics (n=975).
n (%) | ||
---|---|---|
Age | ||
â21â40 | 502 (52) | |
â41â60 | 352 | (36) |
â61â80 | 116 | 12 |
Female | 592 | 61 |
Residence | ||
âPine Ridge | 368 | 38 |
âRosebud | 226 | 23 |
âCheyenne River | 171 | 18 |
âRapid City | 210 | 22 |
Education | ||
â< High school | 205 | 23 |
âHigh school | 183 | 20 |
â> High school | 512 | 57 |
Number of people personally responsible for | ||
â0 or 1 | 361 | 39 |
â2 or 3 | 326 | 35 |
â4+ | 250 | 27 |
Number of cancer knowledge questions answered correctly | ||
â0 | 34 | 4 |
â1 | 667 | 70 |
â2 or 3 | 250 | 26 |
Reliable transportation | 571 | 59 |
Daily phone access | 909 | 93 |
One way travel distance to regular provider | ||
â0â25 miles | 727 | 75 |
â26â50 miles | 154 | 16 |
â51+ miles | 88 | 9 |
Payor of medical bills | ||
âIHS only | 381 | 40 |
âIHS and Medicare | 231 | 24 |
âIHS and other | 163 | 17 |
âMedicare | 143 | 15 |
âSelf-pay and other | 38 | 4 |
First place seeking medical care | ||
âIHS Clinic | 861 | 90 |
âOther | 95 | 10 |
Medical condition requiring regular visits | 444 | 46 |
Frequency of physical exams | ||
âNever/only when I need to | 197 | 21 |
âMore than once a year | 274 | 29 |
âEvery year | 381 | 40 |
âEvery 2â3 years | 92 | 10 |
Doctor or nurse recommended cancer screening | 276 | 29 |
Ever had cancer screening | 424 | 44 |
Received recommended cancer screening by site | ||
âCervix | 287 | 50 |
âBreast | 144 | 51 |
âProstate | 25 | 26 |
âColorectal | 42 | 17 |
IHS, Indian Health Service
There were several significant determinants of cancer screening (Table 2). Most importantly, those who reported that a doctor or nurse had recommended cancer screening had nearly twelve times the odds of ever receiving screening (OR 11.99; 95% CI=7.35, 19.56). Those who were aged 61â80 years, female, and reported having physical exams more than once a year were also significantly more likely to report having ever received cancer screening.
Table 2. Adjusted OR (95% CI) for ever having cancer screening (n=975)a.
% (n) | OR (95% CI) |
||
---|---|---|---|
Age | |||
â21â40 | 52 (502) | 1.0 (1.0, 1.0) | |
â41â60 | 36 (352) | 0.9 | (0.5, 1.4) |
â61â80 | 12 (116) | 4.0 | (1.8, 8.7) |
Female | 61 (592) | 1.0 | (1.0, 1.0) |
Male | 39 (383) | 0.1 | (0, 0.1) |
Residence | |||
âPine Ridge | 38 (368) | 1.0 | (1.0, 1.0) |
âRosebud | 23 (226) | 1.0 | (0.6, 1.7) |
âCheyenne River | 18 (171) | 1.5 | (0.8, 2.9) |
âRapid City | 22 (210) | 1.4 | (0.8, 2.4) |
Education | |||
â< High school graduate | 23 (205) | 1.0 | (1.0, 1.0) |
âHigh school | 20 (183) | 1.8 | (0.9, 3.6) |
â> High school | 57 (512) | 1.7 | (1.0, 3.1) |
Number of people personally responsible for | |||
âPersonally responsible for 0â1 people | 39 (361) | 1.0 | (1.0, 1.0) |
â2 or 3 | 35 (326) | 1.4 | (0.9, 2.3) |
â4+ | 27 (250) | 1.6 | (1.0, 2.8) |
Number of cancer knowledge questions answered correctly | |||
âNo questions answered correctly | 4 (34) | 1.0 | (1.0, 1.0) |
â1 | 70 (667) | 1.4 | (0.5, 4.5) |
â2 or 3 | 26 (250) | 1.6 | (0.5, 5.1) |
Reliable transportation | |||
âYes | 59 (571) | 1.3 | (0.8, 2.0) |
âNo | 41 (394) | 1.0 | (1.0, 1.0) |
Daily phone access | |||
âYes | 93 (909) | 1.8 | (0.7, 4.6) |
âNo | 7 (65) | 1.0 | (1.0, 1.0) |
One way travel distance to regular provider | |||
â0â25 miles | 75 (727) | 1.0 | (1.0, 1.0) |
â26â50 miles | 16 (154) | 1.2 | (0.6, 2.1) |
â51+ miles | 9 (88) | 1.1 | (0.5, 2.4) |
Payor of medical bills | |||
âIHS only | 40 (381) | 1.0 | (1.0, 1.0) |
âIHS and Medicare | 24 (231) | 0.9 | (0.6, 1.6) |
âIHS and other | 17 (163) | 0.8 | (0.5, 1.5) |
âMedicare | 15 (143) | 1.6 | (0.9, 2.9) |
âSelf-pay and other | 4 (38) | 1.3 | (0.4, 3.6) |
First place seeking medical care | |||
âIHS Clinic | 90 (861) | 1.0 | (1.0, 1.0) |
âNot IHS Clinic | 10 (95) | 0.8 | (0.4, 1.5) |
Medical condition requiring regular visits | |||
âYes | 46 (444) | 1.4 | (0.9, 2.2) |
âNo | 54 (524) | 1.0 | (1.0, 1.0) |
Frequency of physical exams | |||
âNever/only when I need to | 21 (197) | 1.0 | (1.0, 1.0) |
âOne time a year | 40 (381) | 1.1 | (0.7, 2.0) |
âEvery 2â3 years | 10 (92) | 1.5 | (0.7, 3.2) |
Doctor or nurse recommended cancer screening | |||
âYes | 29 (276) | 12.0 | (7.4, 19.6) |
âYes | 29 (276) | 12.0 | (7.4, 19.6) |
âNo | 71 (690) | 1.0 | (1.0, 1.0) |
IHS, Indian Health Service
Bold type indicates significance at p<.05
A doctor or nurse recommending screening was also a significant determinant for receiving all of the site-specific screenings (Table 3). For cervical cancer, specifically, a significant predictor of receiving screening was having had physical examinations versus never having had physical examinations. For breast cancer, the only other significant predictor was being aged 61â80 years (OR 2.84; 95% CI=1.31, 6.15) compared to being aged 41â60 years. There were no other significant determinants of having received prostate or colorectal cancer screening.
Table 3. Adjusted OR (95% CI) for having received specific cancer screeningsa.
Cervix (n=579) | Breast (n=280) | Prostate (n=94) | Colorectal (n=253) | |||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|
% (n) | OR | (95% CI) | % (n) | OR | 95% CI | % (n) | OR | 95% CI | n (%) | OR | 95% CI | |
Age (years) | ||||||||||||
â21â40 | 51 (297) | 1.0 (1.0, 1.0) | n/a | n/a | n/a | n/a | n/a | n/a | n/a | n/a | n/a | |
â41â60 | 38 (218) | 0.7 | (0.4, 1.0) | 78 (218) | 1.0 | (1.0, 1.0) | 46 (43) | 1.0 | (1.0, 1.0) | 55 (140)c | 1.0 | (1.0, 1.0) |
â61â80 | 62 (11) | 0.7 | (0.4, 1.3) | 22 (62) | 2.1 | (1.1, 4.3) | 54 (51) | 2.9 | (0.7, 11.6) | 45 (113) | 2.1 | (1.0, 4.8) |
Female | n/a | n/a | n/a | n/a | n/a | n/a | n/a | n/a | n/a | 63 (159) | 1 | (1.0, 1.0) |
Male | n/a | n/a | n/a | n/a | n/a | n/a | n/a | n/a | n/a | 37 (94) | 0.8 | (0.4, 1.9) |
Education | ||||||||||||
â< High school | 21 (111) | 1.0 | (1.0, 1.0) | 48 (19) | 1.0 | (1.0, 1.0) | 26 (22) | 1.0 | (1.0, 1.0) | 22 (52) | 1.0 | (1.0, 1.0) |
âHigh school | 17 (94) | 1.3 | (0.7, 2.4) | 50 (19) | 1.3 | (0.5, 3.5) | 21 (18) | 3.5 | (0.6, 19.8) | 21 (49) | 2.8 | (0.8, 9.8) |
â> High school | 62 (336) | 0.9 | (0.6, 1.5) | 159 (62) | 1.5 | (0.7, 3.2) | 53 (45) | 2.6 | (0.5, 12.2) | 56 (131) | 1.9 | (0.7, 5.3) |
Frequency of physical exams | ||||||||||||
âNever/only when I need to | 19 (109) | 1.0 | (1.0, 1.0) | 19 (51) | 1.0 | (1.0, 1.0) | 16 (15) | 1.0 | (1.0, 1.0) | 17 (43) | 1.0 | (1.0, 1.0) |
âMore than once a year | 9 (50) | 2.8 | (1.6, 4.9) | 6 (17) | 2.0 | (0.9, 4.7) | 7 (6) | 0.5 | (0.1, 3.1) | 6 (14) | 2.2 | (0.6, 9.1) |
âOne time a year | 41 (233) | 2.1 | (1.2, 3.6) | 40 (109) | 1.1 | (0.5, 2.5) | 39 (36) | 0.6 | (0.10, 3.8) | 39 (97) | 2.1 | (0.5, 8.2) |
âEvery 2â3 years | 30 (170) | 3.2 | (1.5, 7.0) | 36 (98) | 2.9 | (.7, 10.5) | 38 (35) | b | n/a | 38 (95) | b | n/a |
Doctor or nurse recommended cancer screening | ||||||||||||
âYes | 62 (355) | 4.9 | (3.3, 7.5) | 54 (150) | 5.2 | (2.9, 9.3) | 32 (29) | 8.6 | (2.5, 29.5) | 45 (113) | 6.4 | (2.5, 16.2) |
âNo | 38 (218) | 1.0 | (1.0, 1.0) | 46 (127) | 1.0 | (1.0, 1.0) | 68 (63) | 1.0 | (1.0, 1.0) | 55 (136) | 1.0 | (1.0, 1.0) |
Bold type indicates significance at p<0.05
Too few individuals in this category to estimate an OR
Includes only individuals aged 51â60 years
Discussion
To our knowledge, this is one of the largest surveys of Native American cancer knowledge, beliefs, and screening behaviors, focusing on this region of the country (the Northern Plains) with high cancer mortality rates. Only 44% of this sample drawn from Native Americans living in the service region of the Rapid City Regional Hospital reported ever receiving cancer screening. The strongest determinant of receiving cancer screening overall or cancer screening for a specific cancer site was recommendation for screening by a doctor or nurse. Other determinants associated with increased likelihood of ever having cancer screening included older age, female gender, and receiving physical exams more than once a year. Increased age was a determinant of breast cancer screening and receiving physical exams was associated with cervical cancer screening.
Patients in the current study reported receiving site-specific cancer screening at proportions much lower than those reported in the general U.S. population.22 This finding may contribute to the disparities in cancer morbidity and mortality observed in this population.1,5,6 The current findings likely reflect a more dramatic disparity than immediately apparent from the percentage differences in that the question asked about ever receiving cancer screening versus the national surveys, which asked about receiving screening in a certain period of time (e.g., the past 3 years for cervical cancer). Interventions that seek to improve cancer screening rates in the study population are clearly needed. The Walking Forward project has been funded by the National Cancer Institute for another 5 years. As part of this project, cancer screening coordinators (CSC) will be embedded within each IHS clinic to facilitate cancer screening events, follow-up of abnormal results and to expedite referrals for cancer treatment. The CSC will work closely with the Walking Forward community navigators and the healthcare providers to increase cancer screening. Finally, all patients with a cancer diagnosis will be evaluated for potential enrollment in a clinical trial.
These findings suggest that the disparity associated with the lack of routine cancer screening in this group could potentially be reduced by an intervention that included strategies to increase provider recommendations for cancer screening. A major finding is the magnitude of the OR (12 times the odds overall and 5â9 times the odds for specific cancer sites) for the effectiveness of a doctor or nurse recommending cancer screening as a determinant of increased cancer screening across all Northern Plains tribes. The importance of provider recommendation for cancer screening has also been demonstrated in other populations23â30 and the lack of cancer screening has been attributed to the lack of screening recommendations by providers rather than patient refusal.31,32
The study results should be interpreted in light of certain study limitations. It is possible that respondents may have received cancer screening and not have been aware of it. However, the literature examining self-report of cancer screening generally indicates that patients over-report receiving screening.49 Participants were not a random sample and thus the results may not be generalizable to all Native Americans from the Northern Plains nor perhaps to other Native American groups. In particular, it is noteworthy that a greater proportion of patients surveyed for this study had completed high school or greater than high school education than what is observed for Native Americans nationally.50 This raises the concern that the true disparity in cancer screening among Native Americans in this region may actually be greater in a more representative sample because other investigators have shown that lower educational level is associated with decreased used of preventative health services and cancer screening in minority populations.51â53
These findings have several implications for stakeholders interested in improving the quality of cancer screening for Native Americans from the Northern Plains. Future research should evaluate the potential for improving cancer screening rates in this vulnerable population.
Acknowledgments
The authors would like to acknowledge that this project was supported by the CommunityâAcademic Partnerships core of the University of Wisconsin Institute for Clinical and Translational Research (UW ICTR) funded through an NIH Clinical and Translational Science Award (CTSA), grant number 1 UL1 RR025011, as well as funds from the National Cancer Institute, under contract no. N01-CO-12400 (NIH grant RFA 1U56CA99010-01).
Footnotes
No financial disclosures were reported by the authors of this paper.
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