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Clinical research advances medical knowledge and improves healthcare outcomes. However, disparities in research participation hinder progress. The Unmet Research Needs in Spondyloarthritis Conference IV highlighted critical insights and strategies to enhance equity in clinical research. Talks focused on engaging underrepresented communities and addressing disparities in rheumatic diseases, particularly spondyloarthritis (SpA), to ensure research results are generalizable and inclusive. Disparities in SpA management, such as greater back pain severity among Black and Hispanic Americans and sex-based differences in pain management, emphasize the need for equitable research. Dr. Elizabeth Ferucci discussed the racial disparities in rheumatologic care, highlighting the importance of early access to rheumatologists and culturally informed primary care to improve outcomes. Dr. Hani El-Gabalawy's talk on engaging Indigenous communities stressed the importance of community consent and reciprocal benefits. Dr. Sarfaraz Hasni's presentation on mitigating disparities in research participation underscored the need for inclusive practices and strategies to promote diverse representation. Finally, Dr. Edith Williams emphasized institutional approaches to fostering equity, including diverse recruitment practices and institutional review board alignment with diversity priorities. Strategies to enhance equity in clinical research include community engagement, addressing logistical barriers to participation, and ensuring diverse research teams. These approaches can dismantle barriers for underrepresented communities, making research more accessible and reflective of the broader population. The SpA research community must commit to creating structures that foster inclusivity, ensuring medical advancements benefit all populations, especially historically underrepresented groups. The principles and strategies proposed serve as a roadmap for achieving equity in SpA research., (Copyright © 2024 by the Journal of Rheumatology.)

Objective: Racial and ethnic disparities in total joint replacements have been documented. Our objective was to determine the rates of total joint replacements for Alaska Native/American Indian (AN/AI) individuals compared with non-AN/AI individuals in Alaska and investigate the differences in characteristics and outcomes by race., Methods: We used hospital discharge data from the Alaska Health Facilities Data Reporting Program from 2015 to 2018. We identified people with an inpatient primary or revision total knee arthroplasty (TKA) or total hip arthroplasty (THA). We determined the population proportion of each procedure, age-adjusted rates by race, age-specific rates, and multivariable adjusted rate ratios for TKA or THA. We compared the characteristics of people undergoing primary TKA and THA by race., Results: In 2,195,806 person-years, there were 8,131 arthroplasty procedures (4,594 primary TKAs, 2,791 primary THAs, 378 revision TKAs, and 368 revision THAs). Primary TKAs and THAs were less likely in people of AN/AI or "Other" race compared with people of White race, with some heterogeneity in the "Other" race category. In multivariable models, the adjusted rate ratio for AN/AI compared with White race for TKA was 0.70 (95% confidence interval [CI] 0.60-0.82) and for THA was 0.69 (95% CI 0.55-0.85). AN/AI individuals undergoing TKA and THA were more likely to reside in rural locations, be younger than 65 years, have longer hospital stay, and discharge to home., Conclusion: This study confirmed the existence of racial disparities in TKA and THA in Alaska. There may be many underlying causes, and future research should focus on improving access to care., (© 2024 American College of Rheumatology.)

Introduction: Previous studies have had mixed findings about the effects of telemedicine on health care utilization. We designed this study to assess differences in health care utilization between ever users of telemedicine for chronic disease specialty care compared to propensity-matched controls., Methods: This observational study of usual care in the Alaska Tribal Health System evaluated telemedicine use (videoconsultation) and healthcare utilization using data from the electronic medical record between 1 January 2015 and 30 June 2019. Eligibility criteria included: age 18 and older, chronic condition diagnosis, and residing in one of four study regions. Cases had ever used telemedicine while controls had not. We used propensity score matching to achieve covariate balance between cases and controls, and then estimated the effect of telemedicine on outcomes using multivariable models. Outcomes included rates of hospitalizations, outpatient visits, and emergency department visits., Results: Cases (ever users of telemedicine) had higher hospitalization rates (rate ratio 1.31, p  < 0.01) and higher outpatient visit rates (rate ratio 1.23, p  < 0.01). Cases had lower rates of emergency department visits, though non-statistically significant (rate ratio 0.87, p  = 0.07). Cases were more likely than controls to have no emergency department visits per follow-up time (49% vs 36%, p  < 0.01)., Discussion: We found higher rates of inpatient and outpatient health care utilization in people who had ever used telemedicine compared to propensity-matched controls, with potentially lower rates of emergency department visits. These findings contribute to the literature on telemedicine and should be considered in the context of other factors influencing telemedicine use and outcomes., Competing Interests: Declaration of conflicting interestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: There is an increased risk of cardiovascular disease in people with many rheumatic diseases. The primary objective of this study was to evaluate cardiovascular disease hospitalizations in Alaska for people with and without a rheumatic disease diagnosis and assess disparities by race, with a focus on Alaska Native and American Indian people., Methods: This study used the Alaska Health Facilities Data Reporting Program data on inpatient hospitalizations from 2015 to 2018. We identified people with a rheumatic disease diagnosis based on any hospitalization with a set of rheumatic disease diagnoses and compared them to people hospitalized but without a rheumatic disease diagnosis. We determined the odds of cardiovascular disease hospitalization by rheumatic disease diagnosis and assessed the influence of race and other factors, using univariate analyses and multivariable models., Results: People with a rheumatic disease diagnosis other than osteoarthritis had higher odds of cardiovascular disease hospitalization. The odds ratio was highest in people with gout compared to other rheumatic diseases. In multivariable models, there was an interaction between race and rheumatic disease status. Specifically, having gout increased the odds of cardiovascular disease hospitalization for people of all races, while having a rheumatic disease other than gout or osteoarthritis increased the odds of cardiovascular disease hospitalization in Alaska Native/American Indian people but not in people of other races., Conclusions: The association between rheumatic disease status and cardiovascular disease hospitalization in Alaska varied by type of rheumatic disease and race. This adds substantially to the literature on associations between rheumatic disease and cardiovascular disease in Indigenous North American populations., (© 2024. The Author(s).)

Objective: Epidemiological data for MCTD are limited. Leveraging data from the Manhattan Lupus Surveillance Program (MLSP), a racially/ethnically diverse population-based registry of cases with SLE and related diseases including MCTD, we provide estimates of the prevalence and incidence of MCTD., Methods: MLSP cases were identified from rheumatologists, hospitals and population databases using a variety of International Classification of Diseases, Ninth Revision codes. MCTD was defined as one of the following: fulfilment of our modified Alarcon-Segovia and Kahn criteria, which required a positive RNP antibody and the presence of synovitis, myositis and RP; a diagnosis of MCTD and no other diagnosis of another CTD; and a diagnosis of MCTD regardless of another CTD diagnosis., Results: Overall, 258 (7.7%) cases met a definition of MCTD. Using our modified Alarcon-Segovia and Kahn criteria for MCTD, the age-adjusted prevalence was 1.28 (95% CI 0.72, 2.09) per 100 000. Using our definition of a diagnosis of MCTD and no other diagnosis of another CTD yielded an age-adjusted prevalence and incidence of MCTD of 2.98 (95% CI 2.10, 4.11) per 100 000 and 0.39 (95% CI 0.22, 0.64) per 100 000, respectively. The age-adjusted prevalence and incidence were highest using a diagnosis of MCTD regardless of other CTD diagnoses and were 16.22 (95% CI 14.00, 18.43) per 100 000 and 1.90 (95% CI 1.49, 2.39) per 100 000, respectively., Conclusions: The MLSP provided estimates for the prevalence and incidence of MCTD in a diverse population. The variation in estimates using different case definitions is reflective of the challenge of defining MCTD in epidemiologic studies., (© The Author(s) 2022. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Objective: Rheumatic diseases are associated with increased rates of hospitalized infection, but few studies have included Indigenous North American populations. Our objective was to evaluate the association of rheumatic disease diagnosis during a hospitalization with odds of hospitalized infections in Alaska and assess differences by race., Methods: We used hospital discharge data from the Alaska Health Facilities Data Reporting Program from 2015 to 2018. We identified people with a rheumatic disease diagnosis based on any hospital discharge diagnosis of a set of rheumatic diseases and compared them to people hospitalized but without a rheumatic disease diagnosis. We determined odds of hospitalized infection by rheumatic disease diagnosis status and type, race, and type of infection. Using multivariable modeling, we determined factors associated with hospitalized infection., Results: Having a rheumatic disease diagnosis other than osteoarthritis was associated with 1.90 higher odds of hospitalized infection overall, whereas people of Alaska Native/American Indian (AN/AI) race with rheumatic disease had 2.44 higher odds. The odds varied by rheumatic disease and were increased in all rheumatic diseases except osteoarthritis (0.73). The most common type of hospitalized infection was sepsis, but opportunistic infections and pneumonia were most associated with a rheumatic disease diagnosis. On multivariable analysis, having a rheumatic disease diagnosis other than osteoarthritis, being of older age, and being of AN/AI race were associated with increased odds of hospitalized infection, with an interaction between race and rheumatic disease status., Conclusion: This study confirmed the association of hospitalized infections with rheumatic disease diagnosis (other than osteoarthritis) during hospitalization and identified disparities by race., (© 2023 The Authors. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology.)

Objective: Few studies have evaluated hospitalizations associated with rheumatic disease in Indigenous North American populations. The objective of this study was to determine the characteristics of people hospitalized with rheumatic disease in Alaska, including a comparison of hospitalizations for Alaska Native/American Indian (AN/AI) people in Alaska compared with those of other races., Methods: We used statewide hospital discharge data from the Alaska Health Facilities Data Reporting Program from 2015 to 2018 for this study. Cases were ascertained based on discharge diagnosis (any listed) of a defined set of rheumatic diseases. We determined characteristics associated with rheumatic disease hospitalizations, including age, gender, and race. Using multivariate modeling, we determined risk factors for hospitalization overall, as well as for specific rheumatic diseases. We compared characteristics of hospital encounters for people with or without rheumatic diseases and by race., Results: We identified 15975 people ever hospitalized with rheumatic disease in the study period and 87138 controls hospitalized but without any rheumatic disease diagnosis. Cases were older than controls and more likely to be female. The three most common types of rheumatic disease associated with hospitalization were osteoarthritis, gout, and rheumatoid arthritis. Compared with other races, AN/AI people were more likely to be hospitalized with rheumatic disease, and this association was true for all specific diseases other than gout., Conclusion: Hospitalizations associated with rheumatic disease are common in Alaska, with an increased likelihood of hospitalization for AN/AI people. This adds to the literature on health disparities in Indigenous North American populations., (© 2022 The Authors. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology.)

Background: There are disparities in access to specialty care for chronic diseases in rural and minority populations. Telemedicine has been proposed to improve access. Introduction: The objective of this study was to identify predictors of telemedicine use for chronic disease specialty care in the Alaska Tribal Health System (ATHS) in the setting of usual care. Materials and Methods: We utilized data from the electronic health record (EHR) of patients from four regions in the ATHS. We queried the EHR to identify cases (ever users of telemedicine) and controls (never users), both of whom had chronic diseases requiring specialty care. Data were collected from 2015 through mid-2019. Results: We included 3,075 patients (799 ever users and 2,276 never users). In univariate analysis, ever users were older, more likely to be male, had more chronic conditions and higher encounter rates. There were differences by region, community, and type of specialty clinic. In our simple multivariate model, factors associated with telemedicine use included age, male gender, region, and outpatient visit rate per year. Having at least one cardiology clinic visit was also associated with telemedicine use, with the highest estimated odds ratio (5.27, p < 0.01). Discussion: This study describes factors associated with telemedicine use in the ATHS before the COVID-19 pandemic. We anticipate monitoring changes in these predictors over time, as we expect them to evolve. Conclusions: We found among factors associated with telemedicine use were age, gender, region, outpatient visit rate, and visits to a specific specialty clinic.

Introduction: There are disparities in access to specialty care for chronic diseases in rural populations. Telemedicine has been proposed to improve access. Introduction: The objective of this study was to identify predictors of telemedicine use for chronic disease specialty care in the Alaska Tribal Health System. Materials and Methods: We collected data from patients and providers about benefits, barriers, and deciding factors for or against telemedicine use. Participants were recruited from three regional tribal health organizations in Alaska during 2019. Data were collected using a patient survey, a provider survey, and patient focus groups. Results: Of the 153 patients surveyed, 104 had never used telemedicine, and 71 (68% of never users) were open to it if offered. Of the 29 providers surveyed, 27 (93%) stated a preference for using telemedicine in the follow-up phase of care. In the focus groups conducted with telemedicine ever users ( n  = 23) and never users ( n  = 14), the identified barriers and benefits were similar, but never users were more likely to emphasize patient preference as a deciding factor, whereas ever users described clinic-related deciding factors more commonly. Relationship building before telemedicine visits was identified as important by some focus group participants. Discussion: This study adds to the literature on patient and provider views of benefits, barriers, and deciding factors for or against the use of telemedicine before the COVID-19 pandemic. These views may evolve over time. Conclusions: Patients and providers identify benefits of telemedicine that may outweigh the barriers in many settings.

Objective: Telemedicine has been proposed to improve access to care in rheumatology, but few studies of telerheumatology have been published. The objective of this study was to evaluate outcomes and quality of care for rheumatoid arthritis (RA) in patients seen by video telemedicine follow-up compared to in-person only., Methods: Individuals in the Alaska Tribal Health System with a diagnosis of RA were recruited when seeing a rheumatologist either in-person or by video telemedicine, both of which were offered as part of usual follow-up care. At baseline, participants completed the Routine Assessment of Patient Index Data 3 (RAPID3) questionnaire and a telemedicine perception survey and agreed to medical record review. Participants repeated surveys by telephone at 6 and 12 months, and medical record abstraction was performed at 12 months for quality measures., Results: At the 12-month outcome assessment, 63 of 122 RA patients (52%) had ever used telemedicine for RA. In univariate analysis, functional status improved over 12 months in the telemedicine group. In multivariate analysis, RAPID3 score and functional status were associated with telemedicine group (higher), with no statistically significant change over the 12-month period. The only quality measure that differed between groups at 12 months in univariate analysis was the proportion of visits in which disease activity was documented (higher in the in-person group, 40% versus 25%; P = 0.02), but this was not significant after multivariate analysis., Conclusion: In short-term follow-up, there was no significant difference in most outcome and quality measures in patients with RA who incorporated telemedicine follow-up in their care compared to in-person only., (© 2020 American College of Rheumatology.)

Objective: To estimate the annual incidence rate of SLE in the USA., Methods: A meta-analysis used sex/race/ethnicity-specific data spanning 2002-2009 from the Centers for Disease Control and Prevention network of four population-based state registries to estimate the incidence rates. SLE was defined as fulfilling the 1997 revised American College of Rheumatology classification criteria. Given heterogeneity across sites, a random effects model was employed. Applying sex/race/ethnicity-stratified rates, including data from the Indian Health Service registry, to the 2018 US Census population generated estimates of newly diagnosed SLE cases., Results: The pooled incidence rate per 100 000 person-years was 5.1 (95% CI 4.6 to 5.6), higher in females than in males (8.7 vs 1.2), and highest among black females (15.9), followed by Asian/Pacific Islander (7.6), Hispanic (6.8) and white (5.7) females. Male incidence was highest in black males (2.4), followed by Hispanic (0.9), white (0.8) and Asian/Pacific Islander (0.4) males. The American Indian/Alaska Native population had the second highest race-specific SLE estimates for females (10.4 per 100 000) and highest for males (3.8 per 100 000). In 2018, an estimated 14 263 persons (95% CI 11 563 to 17 735) were newly diagnosed with SLE in the USA., Conclusions: A network of population-based SLE registries provided estimates of SLE incidence rates and numbers diagnosed in the USA., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: Epidemiologic data on systemic lupus erythematosus (SLE) are limited, particularly for racial/ethnic subpopulations in the US. This meta-analysis leveraged data from the Centers for Disease Control and Prevention (CDC) National Lupus Registry network of population-based SLE registries to estimate the overall prevalence of SLE in the US., Methods: The CDC National Lupus Registry network includes 4 registries from unique states and a fifth registry from the Indian Health Service. All registries defined cases of SLE according to the American College of Rheumatology (ACR) 1997 revised classification criteria for SLE. Case findings spanned either 2002-2004 or 2007-2009. Given the heterogeneity across sites, a random-effects model was used to calculate the pooled prevalence of SLE. An estimate of the number of SLE cases in the US was generated by applying sex/race-stratified estimates to the 2018 US Census population., Results: In total, 5,417 cases were identified as fulfilling the ACR SLE classification criteria. The pooled prevalence of SLE from the 4 state-specific registries was 72.8 per 100,000 person-years (95% confidence interval [95% CI] 65.3-81.0). The prevalence estimate was 9 times higher among females than among males (128.7 versus 14.6 per 100,000), and highest among Black females (230.9 per 100,000), followed by Hispanic females (120.7 per 100,000), White females (84.7 per 100,000), and Asian/Pacific Islander females (84.4 per 100,000). Among males, the prevalence of SLE was highest in Black males (26.7 per 100,000), followed by Hispanic males (18.0 per 100,000), Asian/Pacific Islander males (11.2 per 100,000), and White males (8.9 per 100,000). The American Indian/Alaska Native population had the highest race-specific SLE estimates, both among females (270.6 per 100,000) and among males (53.8 per 100,000). In 2018, an estimated 204,295 individuals (95% CI 160,902-261,725) in the US fulfilled the ACR classification criteria for SLE., Conclusion: A coordinated network of population-based SLE registries provides more accurate estimates of the prevalence of SLE and the numbers of individuals affected with SLE in the US in 2018., (© 2020, American College of Rheumatology.)

Background: Chronic diseases disproportionately affect minority and rural populations. Specialist access improves health outcomes in many chronic diseases but access to specialist care may be limited. Video telemedicine can expand access to specialists in rural locations. Introduction: The objective of this study was to understand patient and provider perspectives on the benefits, barriers, and best uses of video telemedicine in chronic disease specialty care in the setting of a well-established store-and-forward telehealth network with recent expansion of video telemedicine. Materials and Methods: Patients and providers were recruited from specialty clinics at the Alaska Native Medical Center. Semi-structured interviews were conducted after a brief survey. Interview questions focused on perceived benefits and barriers to use of video telemedicine for chronic disease specialty care, as well as the best uses of telemedicine and factors that improve the ease of use. Results: Participants considered the major benefit of telemedicine to be a reduction in travel and related costs. Telemedicine was considered by most participants as less appropriate for new conditions or for new patients. Limitations included the need to perform a physical examination or needing tests, procedures, or medications that cannot be performed in rural clinics. Discussion: This study describes the views of patients and providers who have experience with telemedicine. It did not evaluate the cost-effectiveness or impact on health outcomes, although further studies are planned. Conclusions: Patients and providers view video telemedicine as a reasonable addition to in-person visits for the management of chronic disease, although there are limitations.

Meaningful engagement of Alaska Native (AN) tribes and tribal health organizations is essential in the conduct of socially responsible and ethical research. As genomics becomes increasingly important to advancements in medicine, there is a risk that populations not meaningfully included in genomic research will not benefit from the outcomes of that research. AN people have historically been underrepresented in biomedical research; AN underrepresentation in genomics research is compounded by mistrust based on past abuses, concerns about privacy and data ownership, and cultural considerations specific to this type of research. Working together, the National Human Genome Research Institute and two Alaska Native health organizations, Southcentral Foundation and the Alaska Native Health Board, cosponsored a workshop in July 2018 to engage key stakeholders in discussion, strengthen relationships, and facilitate partnership and consideration of participation of AN people in community-driven biomedical and genomic research. AN priorities related to translation of genomics research to health and health care, return of genomic results, design of research studies, and data sharing were discussed. This report summarizes the perspectives that emerged from the dialogue and offers considerations for effective and socially responsible genomic research partnerships with AN communities.

Studies have described a high incidence and prevalence of several rheumatic diseases in indigenous North American populations. Conditions studied most frequently with consistently high burden of disease include rheumatoid arthritis, spondyloarthritis, and systemic lupus erythematosus. Crystal-induced arthritis has been reported to have a lower prevalence than expected. Information about genetic and environmental risk factors is available for some of these conditions. An awareness of the epidemiology of rheumatic diseases in indigenous North American populations is important for clinicians involved in caring for patients in these populations as well as for planning health service delivery in these communities., Competing Interests: Disclosure The authors have nothing to disclose., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: Telemedicine is increasingly being offered to patients for rheumatology care, but few studies have examined factors associated with telemedicine use or outcomes of telemedicine in rheumatology. The objective of this analysis was to determine factors associated with the use of video telemedicine when offered as part of usual care for follow-up of rheumatoid arthritis (RA)., Methods: Individuals in the Alaska Tribal Health System with a diagnosis of RA were recruited when seeing a rheumatologist either in-person or by video telemedicine, both of which were offered as part of usual care. At the study visit, participants completed the Routine Assessment of Patient Index Data 3 (RAPID3) and a telemedicine perception survey and agreed to a medical record review for demographics and disease characteristics. Data from this visit were analyzed to determine factors associated with using telemedicine for RA, compared to being seen in-person only., Results: Of 122 participants enrolled in the study, 56 (46%) had been seen by telemedicine at least once. Factors associated with telemedicine use in univariate analysis included a higher RAPID3 score, a higher number of rheumatologist visits in the preceding year, more positive perceptions of telemedicine, and seeing a physician who used telemedicine more often. On multivariate analysis, these 4 factors all remained significant. Demographic and other disease-related factors or comorbidities were not associated with telemedicine use., Conclusion: When offered as an option for rheumatology care, video telemedicine was more likely to be used by RA patients with higher disease activity and more positive perceptions of telemedicine, and by patients whose physicians used telemedicine more often., (© 2019, American College of Rheumatology.)

Objective: To determine the prevalence and clinical characteristics of juvenile idiopathic arthritis (JIA) in Alaska Native children., Methods: Potential cases of JIA were identified by querying administrative data from hospitals and clinics in the Alaska Tribal Health System for codes possibly identifying JIA. Medical record abstraction was performed to confirm criteria met for JIA, demographic and clinical characteristics, and treatment patterns. Individuals age ≤18 years with a confirmed diagnosis of JIA were included. The denominator for prevalence was the 2015 Alaska Area Indian Health Service user population age of ≤18 years., Results: The unadjusted prevalence of JIA in Alaska Native children was 74.6 per 100,000 (age-adjusted 79.0 per 100,000). JIA was more common in females than males (unadjusted prevalence 105.8 versus 45.0 per 100,000). Oligoarthritis was the most common subtype (31% of cases), but polyarthritis and enthesitis-related arthritis were also common (26% and 24% of cases, respectively), with a notably high prevalence of enthesitis-related arthritis. The median age at diagnosis was 9 years. Of the combined cohort with results available, 56% were antinuclear antibody positive, 23% were rheumatoid factor positive, 19% were anti-cyclic citrullinated peptide antibody positive, and 57% had the presence of HLA-B27. Uveitis had been diagnosed in 16% of cases., Conclusion: The prevalence of JIA in Alaska Native children may be higher than the general US population. Enthesitis-related arthritis makes up a higher proportion of cases than in other populations described likely because of the high prevalence of HLA-B27 in this population., (© 2019, American College of Rheumatology.)

Objective: To determine the incidence of inflammatory arthritis and autoantibody prevalence in Indigenous North American people., Methods: Unaffected relatives of Indigenous North Americans with rheumatoid arthritis (RA) from central Canada and Alaska were systematically monitored from 2005 to 2017. Rheumatoid factor (RF) and anti-citrullinated protein antibodies (ACPAs) were tested at every visit, and a subset was tested for ACPA fine specificity using a custom multiplex assay. Multistate models based on all available study visits were developed to determine the likelihood of transitioning between autoantibody states, or to inflammatory arthritis., Results: Eighteen of 374 relatives (4.8%) developed inflammatory arthritis during follow-up (after a mean ± SD of 4.7 ± 2.4 years), yielding a transition rate of 9.2 cases/1,000 person-years. Thirty percent of those who developed inflammatory arthritis were seronegative at baseline, but all were seropositive at inflammatory arthritis onset. Although 30% of ACPA/RF double-seropositive individuals developed inflammatory arthritis (after 3.2 ± 2.2 years), the majority of these individuals did not develop inflammatory arthritis. Multistate modeling indicated a 71% and 68% likelihood of ACPA and RF seropositive states, respectively, reverting to a seronegative state after 5 years, and a 39% likelihood of an ACPA/RF double-seropositive state becoming seronegative. Fine specificity testing demonstrated an expansion of the ACPA repertoire prior to the development of inflammatory arthritis., Conclusion: Despite a high incidence of inflammatory arthritis in this cohort of at-risk relatives of Indigenous North Americans with RA, a large proportion of autoantibody-positive individuals do not develop inflammatory arthritis and revert back to an autoantibody-negative state., (© 2019, American College of Rheumatology.)

Background: Research adhering to community engagement processes leads to improved outcomes. The level of Indigenous communities' engagement in rheumatology research is unknown., Objective: To characterize the frequency and level of community engagement reporting in arthritis studies conducted in Australia (AUS), Canada (CAN), New Zealand (NZ) and the United States of America (USA)., Methods: Studies identified through systematic reviews on topics of arthritis epidemiology, disease phenotypes and outcomes, health service utilization and mortality in Indigenous populations of AUS, CAN, NZ and USA, were evaluated for their descriptions of community engagement. The level of community engagement during inception, data collection and results interpretation/dissemination stages of research was evaluated using a custom-made instrument, which ranked studies along the community engagement spectrum (i.e. inform-consult-involve-collaborate-empower). Meaningful community engagement was defined as involving, collaborating or empowering communities. Descriptive analyses for community engagement were performed and secondary non-parametric inferential analyses were conducted to evaluate the possible associations between year of publication, origin of the research idea, publication type and region of study; and meaningful community engagement., Results: Only 34% (n = 69) of the 205 studies identified reported community engagement at ≥ 1 stage of research. Nearly all studies that engaged communities (99% (n = 68)) did so during data collection, while only 10% (n = 7) did so at the inception of research and 16% (n = 11) described community engagement at the results' interpretation/dissemination stage. Most studies provided community engagement descriptions that were assessed to be at the lower end of the spectrum. At the inception of research stage, 3 studies reported consulting communities, while 42 studies reported community consultation at data collection stage and 4 studies reported informing or consulting communities at the interpretation/dissemination of results stage. Only 4 studies described meaningful community engagement through all stages of the research. Inferential statistics identified that studies with research ideas that originated from the Indigenous communities involved were significantly more associated with achieving meaningful community engagement., Conclusions: The reporting of Indigenous community engagement in published arthritis studies is limited in frequency and is most frequently described at the lower end of the community engagement spectrum. Processes that support meaningful community engagement are to be promoted., (Copyright © 2018 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives The objective of this study is to investigate differences in the diagnosis and management of systemic lupus erythematosus (SLE) by primary care and specialist physicians in a population-based registry. Methods This study includes individuals from the 2009 Indian Health Service lupus registry population with a diagnosis of SLE documented by either a primary care provider or specialist. SLE classification criteria, laboratory testing, and medication use at any time during the course of disease were determined by medical record abstraction. Results Of the 320 individuals with a diagnosis of SLE, 249 had the diagnosis documented by a specialist, with 71 documented by primary care. Individuals with a specialist diagnosis of SLE were more likely to have medical record documentation of meeting criteria for SLE by all criteria sets (American College of Rheumatology, 79% vs 22%; Boston Weighted, 82% vs 32%; and Systemic Lupus International Collaborating Clinics, 83% vs 35%; p < 0.001 for all comparisons). In addition, specialist diagnosis was associated with documentation of ever having been tested for anti-double-stranded DNA antibody and complement 3 and complement 4 ( p < 0.001). Documentation of ever receiving hydroxychloroquine was also more common with specialist diagnosis (86% vs 64%, p < 0.001). Conclusions Within the population studied, specialist diagnosis of SLE was associated with a higher likelihood of having SLE classification criteria documented, being tested for biomarkers of disease, and ever receiving treatment with hydroxychloroquine. These data support efforts both to increase specialist access for patients with suspected SLE and to provide lupus education to primary care providers.

Objectives: The objectives of this study were to determine the prevalence of hepatitis C virus-associated inflammatory arthritis, to describe its clinical and immunologic correlates, and to identify features that are characteristic of arthritis in chronic hepatitis C., Methods: Participants with chronic hepatitis C infection enrolled in a population-based cohort study in Alaska and who had not received anti-viral treatment for hepatitis C were recruited. In a cross-sectional study, we assessed joint symptoms and signs, performed autoantibody and cytokine testing, and abstracted medical records for features of hepatitis C and arthritis., Results: Of the 117 enrolled participants, 8 (6.8%) had hepatitis C-associated arthritis. The participants with arthritis were younger than those without (median age: 45 vs. 52, p = 0.02). Rheumatoid factor was commonly present among patients with hepatitis C-associated arthritis. The only studied autoantibody found more commonly in patients with HCV arthritis than those without arthritis was anti-nuclear antibody (63% vs. 23%, p = 0.026). The only joint symptom significantly more common in hepatitis C arthritis was self-reported joint swelling (75% vs. 26%, p = 0.007). Features of fibromyalgia were more common and functional status was worse in those with arthritis than those without. No cytokines differed in patients with and without arthritis. There were no associations of arthritis or autoantibodies with liver-related outcomes., Conclusions: In this study of a cohort of individuals with chronic HCV infection, HCV-associated arthritis was present in less than 10%. Few serologic features distinguished participants with or without arthritis, but self-reported joint swelling was more common in those with arthritis., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Objective: The pathogenetic mechanisms by which HLA-DRB1 alleles are associated with anticitrullinated peptide antibody (ACPA)-positive rheumatoid arthritis (RA) are incompletely understood. RA high-risk HLA-DRB1 alleles are known to share a common motif, the 'shared susceptibility epitope (SE)'. Here, the electropositive P4 pocket of HLA-DRB1 accommodates self-peptide residues containing citrulline but not arginine. HLA-DRB1 His/Phe13β stratifies with ACPA-positive RA, while His13βSer polymorphisms stratify with ACPA-negative RA and RA protection. Indigenous North American (INA) populations have high risk of early-onset ACPA-positive RA, whereby HLA-DRB1*04:04 and HLA-DRB1*14:02 are implicated as risk factors for RA in INA. However, HLA-DRB1*14:02 has a His13βSer polymorphism. Therefore, we aimed to verify this association and determine its molecular mechanism., Methods: HLA genotype was compared in 344 INA patients with RA and 352 controls. Structures of HLA-DRB1*1402-class II loaded with vimentin-64Arg 59-71 , vimentin-64Cit 59-71 and fibrinogen β-74Cit 69-81 were solved using X-ray crystallography. Vimentin-64Cit 59-71 -specific and vimentin 59-71 -specific CD4+ T cells were characterised by flow cytometry using peptide-histocompatibility leukocyte antigen (pHLA) tetramers. After sorting of antigen-specific T cells, TCRα and β-chains were analysed using multiplex, nested PCR and sequencing., Results: ACPA + RA in INA was independently associated with HLA-DRB1*14:02 . Consequent to the His13βSer polymorphism and altered P4 pocket of HLA-DRB1*14:02, both citrulline and arginine were accommodated in opposite orientations. Oligoclonal autoreactive CD4+ effector T cells reactive with both citrulline and arginine forms of vimentin 59-71 were observed in patients with HLA-DRB1*14:02 + RA and at-risk ACPA - first-degree relatives. HLA-DRB1*14:02-vimentin 59-71 -specific and HLA-DRB1*14:02-vimentin-64Cit 59-71 -specific CD4+ memory T cells were phenotypically distinct populations., Conclusion: HLA-DRB1*14:02 broadens the capacity for citrullinated and native self-peptide presentation and T cell expansion, increasing risk of ACPA+ RA., Competing Interests: Competing interests: There was no commercial support for this work. However we wish to declare that RT is a director of a spin-off company that is commercialising antigen-specific immunotherapy for rheumatoid arthritis., (© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2017. All rights reserved. No commercial use is permitted unless otherwise expressly granted.)

Objective: To identify and summarize the published and gray literature on the use of telemedicine for the diagnosis and management of inflammatory and/or autoimmune rheumatic disease., Methods: We performed a registered systematic search (CRD42015025382) for studies using MEDLINE (1946 to July 2015), Embase (1974 to July 2015), Web of Science (1900 to July 2015), and Scopus (1946 to July 2015) databases. We included studies that demonstrated the use of telemedicine for diagnosis and/or management of inflammatory/autoimmune rheumatic disease. Following data extraction, we performed a descriptive analysis., Results: Our literature search identified 1,468 potentially eligible studies. Of these studies, 20 were ultimately included in this review. Studies varied significantly in publication type, quality of evidence, and the reporting of methods. Most demonstrated a high risk of bias. Rheumatoid arthritis was the most commonly studied rheumatic disease (42% of patients). Studies demonstrated conflicting results regarding the effectiveness of telemedicine (18 found it effective, 1 found it effective but possibly harmful, and 1 found it ineffective). A limited number of studies included some component of a cost analysis (n = 6; 16% of patients); all of these found telemedicine to be cost-effective., Conclusion: Studies identified by this systematic review generally found telemedicine to be effective for the diagnosis and management of autoimmune/inflammatory rheumatic disease; however, there is limited evidence to support this conclusion. Further studies are needed to determine the best uses of telemedicine for the diagnosis and management of these conditions., (© 2016, American College of Rheumatology.)

Objective: To determine the prevalence of mixed connective tissue disease (MCTD) in 2007 in the Indian Health Service (IHS) active clinical population from 3 regions of the US., Methods: The IHS Lupus Registry was designed to identify possible MCTD cases in addition to systemic lupus erythematosus cases. The population denominator for this report includes American Indian or Alaska Native adults within the IHS active clinical population in 2007, residing in select communities in 3 regions of the US. Potential MCTD cases were identified using a broad range of diagnostic codes and were confirmed by detailed medical record abstraction. Classification as MCTD for this analysis required both rheumatologist diagnosis of MCTD without diagnosis of other CTD, and documentation of the Alarcón-Segovia MCTD criteria in the medical record. Prevalence was also calculated using 2 alternate definitions of MCTD., Results: The age-adjusted prevalence of MCTD using our primary definition was 6.4 per 100,000 (95% confidence interval 2.8-12.8). The prevalence was higher in women than in men using all 3 definitions of MCTD, and no men met the criteria for the primary definition of MCTD., Conclusion: The first population-based estimates of the prevalence of MCTD in the US American Indian/Alaska Native population show that the prevalence appears to be higher than in other populations. Additional population-based estimates are needed to better understand the epidemiology of MCTD., (© 2016, American College of Rheumatology.)

Objective: Few studies have investigated the epidemiology of systemic lupus erythematosus (SLE) in American Indian and Alaska Native populations. The objective of this study was to determine the prevalence and incidence of SLE in the Indian Health Service (IHS) active clinical population in 3 regions of the US., Methods: For this population-based registry within the IHS, the denominator consisted of individuals in the IHS active clinical population in 2007, 2008, and/or 2009 and residing in a community in 1 of 3 specified regions. Potential SLE cases were identified based on the presence of a diagnostic code for SLE or related disorder in the IHS National Data Warehouse. Detailed medical record abstraction was performed for each potential case. The primary case definition was documentation in the medical record of ≥4 of the revised American College of Rheumatology criteria for the classification of SLE. Prevalence was calculated for 2007, and the mean annual incidence was calculated for the years 2007 through 2009., Results: The age-adjusted prevalence and incidence of SLE according to the primary definition were 178 per 100,000 person-years (95% confidence interval [95% CI] 157-200) and 7.4 per 100,000 person-years (95% CI 5.1-10.4). Among women, the age-adjusted prevalence was 271, and the age-adjusted incidence was 10.4. The prevalence was highest in women ages 50-59 years and in the Phoenix Area IHS., Conclusion: The first population-based lupus registry in the US American Indian and Alaska Native population has demonstrated that the prevalence and incidence of SLE are high. Our estimates are as high as or higher than the rates reported in the US black population., (Copyright © 2014 by the American College of Rheumatology.)

Background & Aims: The Alaska Native population is one of few populations in the world with a high prevalence of autoimmune hepatitis. The objective of this study was to determine the frequency and HLA and clinical associations of autoantibodies in Alaska Native people with autoimmune hepatitis., Methods: Alaska Native individuals with autoimmune hepatitis were recruited in clinics conducted statewide. Sera were tested for the presence of autoantibodies described in either autoimmune hepatitis or rheumatic disease. Associations between autoantibodies and HLA alleles and clinical features were assessed., Results: Seventy-one patients were included. At the study visit, 34 patients (47.9%) had antibodies to double-stranded DNA by immunofluorescence; 27 (38.0%) had anti-neutrophil cytoplasmic antibodies; and 11 (15.5%) had anti-Ro antibodies. Only one person had antibodies against soluble liver antigen, and in that person, anti-Ro was absent. Associations were found between autoantibodies and HLA alleles, including positive associations between HLA DR3 and anti-double-stranded DNA antibodies and between HLA DR14 and antineutrophil cytoplasmic antibodies. There was no association between autoantibodies and clinical outcomes., Conclusions: As in other populations, the prevalence of anti-double-stranded DNA antibodies and antineutrophil cytoplasmic antibodies is high in Alaska Native people with autoimmune hepatitis. In contrast to data from other populations, there is a lower prevalence of anti-soluble liver antigen and a lack of association between anti-Ro and anti-soluble liver antigen. In addition, the HLA profile and associations with autoantibodies are unique. No clear prognostic implications of autoantibodies have emerged in this population., (© 2013 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.)

Objective: To determine whether anti-peptidylarginine deiminase type 4 (PAD4) antibodies were present in first-degree relatives (FDR) of patients with rheumatoid arthritis (RA) in 2 indigenous North American populations with high prevalence of RA., Methods: Participants were recruited from 2 indigenous populations in Canada and the United States, including patients with RA (probands), their unaffected FDR, and healthy unrelated controls. Sera were tested for the presence of anti-PAD4 antibodies, anticyclic citrullinated peptide (anti-CCP) antibodies, and rheumatoid factor (RF). HLA-DRB1 subtyping was performed and participants were classified according to number of shared-epitope alleles present., Results: Antibodies to PAD4 were detected in 24 of 82 (29.3%) probands; 2 of 147 (1.4%) relatives; and no controls (p < 0.0001). Anti-CCP was present in 39/144 (27.1%) of the relatives, and there was no overlap between positivity for anti-CCP and PAD4 in the relatives. In RA patients, anti-PAD4 antibodies were associated with disease duration (p = 0.0082) and anti-CCP antibodies (p = 0.008), but not smoking or shared-epitope alleles., Conclusion: Despite a significant prevalence of anti-CCP in FDR, anti-PAD4 antibodies were almost exclusively found in established RA. The prevalence of anti-PAD4 antibodies in RA is similar to the prevalence described in other populations and these autoantibodies are associated with disease duration and anti-CCP in RA.

Objective: This study evaluated the construct validity of the 12-Item Short Form Survey Instrument (SF-12) in a cohort of American Indian and Alaska Native (AIAN) people. We evaluated two scoring methods to determine their utility in this population., Methods: Participants (N = 11,127) were aged 18 and older, self-identified as AIAN, and had complete SF-12 interview data. Physical and mental health summary scores were calculated using traditional SF-12 (PCS12 and MCS12) and RAND-12 (PHC and MHC) scoring methods., Results: Women scored lower than men on the PHC, PCS12, MHC, and MCS12, as did those with more medical conditions versus none. Those aged 55 and older scored lower on the PHC and PCS12 than younger people. There was no difference in the mean MCS12 score by age and for those 31-55 and aged older than 55 for the MHC., Conclusions: This study demonstrates the construct validity of the PCS12/MCS12 and PHC/MHC in a cohort of AIAN people.

Background: Few studies have investigated depression among Alaska Native people (ANs). Depression prevalence and associated factors among EARTH Alaska study participants are described., Methods: The nine-item Patient Health Questionnaire (PHQ-9) assessed depression among 3771 ANs. Participants with PHQ-9 scores≥10 out of 27 were classified as positive for depression. Logistic regression analyses evaluated odds of scoring positive versus negative for depression by demographic, cultural, then health and lifestyle factors., Results: Twenty percent of women and 13% of men scored positive for depression. Univariate and multivariate models were fit separately for men and women. Among demographic factors, below median income was associated with positive depression scores for both genders. Among men, odds of depression were higher if unmarried and/or if highest educational level was less than high school. Women 34 to 59 years of age had increased odds of scoring positive. Little or no identification with tribal tradition was associated with increased odds of depression in women and decreased odds in men. For both genders, chronic physical conditions and poorer self-reported health were associated with positive depression scores then binge alcohol drinking and current tobacco use increased odds of depression among women only., Limitations: Factors analyzed were self-reported without clinician follow-up in a non-random convenience sample of adults., Conclusions: Depression is common among ANs with rates comparable to other indigenous cross-sectional investigations. Depression is associated with lower income and poorer physical health. Prevention and intervention efforts should consider gender as other associated factors varied between men and women., (Copyright © 2011 Elsevier B.V. All rights reserved.)

This study describes the lifetime prevalence of self-reported asthma among American Indian and Alaska Native (AI/AN) people who participated in the Education and Research Towards Health (EARTH) study in Alaska. We conducted a cross-sectional analysis of asthma prevalence by sex and its associations with sociodemographic, health, and environmental factors. Among 3,828 AI/AN adults, we found a higher age-sex adjusted prevalence of asthma (15.4%) than is found in the general U.S. adult (11.0%) population based on the 2006 National Health Interview Survey. After multivariable analysis, self-reported asthma among men was associated with increased age, unemployment, lower income, and obesity. Among women, self-reported asthma was associated with increased age, being divorced/separated, living in Alaska's southcentral region, self-reported fair/poor health status, obesity, and indoor mold. Our data suggest that AI/AN adults have higher prevalence of lifetime asthma than the general U.S. population. Further study is necessary to understand asthma in this population.

Background: In autoimmune hepatitis (AIH) patients treated with azathioprine, the utility of measuring thiopurine methyltransferase (TPMT) and azathioprine metabolites has been limited., Objective: To evaluate the association between TPMT genotype and enzyme activity, and the impact of TPMT enzyme activity on levels of azathioprine metabolites and leukopenia to assess the clinical utility of monitoring azathioprine metabolites in Alaska Native and other non-Caucasian AIH patients., Methods: Individuals with AIH were recruited at the Alaska Native Medical Center (Alaska, USA) and the University of Texas Southwestern Medical Center (Texas, USA). Identification of TPMT genotype and measurement of enzyme activity were performed. The metabolites 6-thioguanine nucleotides (6-TGN) and 6-methylmercaptopurine (6-MMP) were measured in participants who were on azathioprine, and the associations with disease remission and leukopenia were assessed., Results: Seventy-one patients with AIH were included. The distribution of TPMT genotypes was similar to that reported in other populationbased studies. TPMT genotype and phenotype were strongly associated (P<0.0001). Levels of 6-TGN and 6-MMP correlated with azathioprine dose only in individuals with normal TPMT enzyme activity. Patients with leukopenia due to azathioprine were no more likely to have abnormal TPMT enzyme levels than those without leukopenia (P=1.0). No specific level of 6-TGN metabolites was associated with remission or leukopenia., Discussion: Results of the present study were consistent with previous studies in Caucasian populations. TPMT genotype and phenotype correlated well, and levels of 6-TGN and 6-MMP metabolites were not associated with remission of AIH or toxicity of azathioprine., Conclusions: The present study confirmed the limited utility of monitoring levels of azathioprine metabolites in AIH patients.

Objective: Rheumatoid arthritis (RA) is highly prevalent in some Alaska Native and American Indian populations. Quality indicators for RA have been proposed, but these have not been widely implemented or used to assess RA care in Alaska Native or American Indian populations., Methods: Medical records were included if they met the following criteria: RA diagnosed before October 2000 fulfilling American College of Rheumatology classification criteria; all care for RA at the Alaska Native Medical Center. Records were reviewed for a 5-year period to determine compliance with eight quality indicators defined by the Arthritis Foundation Quality Indicator Program. Multivariate logistic regression was performed to analyse associations with quality of care., Results: There were 106 individuals included in the study. The highest-scoring measures were folic acid prescription if on methotrexate (93.3%) and disease-modifying antirheumatic drug prescription (90.6%). The lowest scoring measure was radiographs of both hands and feet (16.0%). In multivariate analysis, the factor most strongly associated with disease-modifying antirheumatic drug prescriptions, annual exam for RA and hand radiographs was at least one visit with a rheumatologist., Conclusions: Quality of care for RA varies by measure and is better for patients who see a rheumatologist. These data provide an initial evaluation of RA quality of care in a unique minority population with an integrated healthcare system.

Introduction: While aggregate rates of tobacco use for Alaska Native (AN) and American Indian people are high, use rates vary among populations and factors associated with use are not fully understood. For AN people living in three regions of Alaska, we present prevalence of tobacco use as well as factors associated with use., Methods: Using data from 3,828 participant questionnaires, associations with tobacco use are examined with chi-square tests and multivariate logistic regression. Covariates investigated include demographic factors, identification with tribal tradition, language spoken in the home, binge drinking, and depression screening results., Results: Current smoking was more prevalent among men. In multivariate analysis, higher likelihood of current smoking was found for participants with these characteristics: younger, unmarried, low income, and increased frequency of binge drinking. For women, additional characteristics included no high school diploma and positive depression screening. Participants from southeastern Alaska were less likely to be current smokers. Current smokeless tobacco use rates were similar across gender. Higher likelihood of current smokeless use was found in southwestern Alaska and among those with positive depression screening. Women with low income and who reported at least some identification with tribal tradition had increased odds of current smokeless use. More than 20% of smokeless tobacco users reported initiating by age 10., Discussion: Rates of tobacco use by AN people continue to be higher than other U.S. populations. Tobacco initiation prevention efforts targeting AN youth at an early age are recommended, given the early age of initiation demonstrated in this study.

Objective: Anticitrullinated protein antibodies (ACPA) are relatively specific for rheumatoid arthritis (RA), and predate disease. The oral pathogen Porphyromonas gingivalis may play a role in breaking immune tolerance to citrullinated antigens. We studied a cohort of patients with RA and their relatives looking for associations between anti-P. gingivalis antibodies and ACPA., Methods: Patients with RA (n = 82) and their relatives (n = 205) from a North American Native (NAN) population were studied, along with 47 NAN and 60 non-NAN controls. IgM and IgA rheumatoid factor (RF) were tested by nephelometry and ELISA. Second-generation anticyclic citrullinated peptide (anti-CCP2) isotypes and IgG anti-P. gingivalis lipopolysaccharides were tested by ELISA. HLA-DRB1 typing was performed by sequencing. Oral hygiene and smoking habits were assessed by questionnaires., Results: Autoantibody frequency in patients with RA and relatives: ACPA 91% vs 19%, respectively; IgM RF 82% vs 17%; IgA RF 48% vs 22%. Anti-P. gingivalis levels were higher in patients with RA compared to relatives and controls (p = 0.005) and higher in ACPA-positive patients with RA than in ACPA-negative patients with RA (p = 0.04) and relatives (p < 0.001), but comparable in RF-positive and RF-negative patients and relatives. Poor oral hygiene and smoking were prevalent, but with no clear association with autoantibodies. Relatives with 2 shared-epitope alleles were more likely to be ACPA-positive (OR 2.5, p = 0.02)., Conclusion: In a genetically predisposed population of NAN patients with RA and their relatives, anti-P. gingivalis antibodies were associated with ACPA. These findings suggest that immune responses to P. gingivalis may be involved in breaking immune tolerance to citrullinated antigens.

Purpose: Little is known about obesity-related health issues among American Indian and Alaska Native (AIAN) populations., Approach: A large cohort of AIAN people was assembled to evaluate factors associated with health., Setting: The study was conducted in Alaska and on the Navajo Nation., Participants: A total of 11,293 AIAN people were included., Methods: We present data for body mass index (BMI, kg/m2) and waist circumference (cm) to evaluate obesity-related health factors., Results: Overall, 32.4% of the population were overweight (BMI 25-29.9 kg/m2), 47.1% were obese (BMI > or = 30 kg/m2), and 21.4% were very obese (BMI, > or = 35 kg/m2). A waist circumference greater than 102 cm for men and greater than 88 cm for women was observed for 41.7% of men and 78.3% of women. Obese people were more likely to perceive their health as fair/poor than nonobese participants (prevalence ratio [PR], 1.91; 95% CI, 1.71-2.14). Participants younger than 30 years were three times more likely to perceive their health as being fair or poor when their BMI results were 35 or greater compared with those whose BMI results were less than 25 kg/m2. A larger BMI was associated with having multiple medical conditions, fewer hours of vigorous activity, and more hours of television watching., Conclusions: Given the high rates of obesity in AIAN populations and the association of obesity with other health conditions, it is important to reduce obesity among AIAN people.

Background: Family history of diseases among American Indian and Alaska Native (AIAN) people may influence health., Methods: We examine the prevalence of family health history among a cohort of AIAN people (n= 10,374) enrolled in the Education and Research Towards Health (EARTH) Study. We evaluate the association between having a positive family history and health behaviors to determine if those reporting a family history were more likely to report lifestyles that put them at risk of developing these health conditions., Results: Among participants, 17.7% reported not knowing their family history and 23.5% preferred not to answer the family history component of the questionnaire. Eight percent of participants reported a family history of colorectal cancer, 7.9% a family history of breast cancer, 25.8% a family history of heart attack, and 46.7% a family history of diabetes. Obesity, physical activity, cholesterol, and perceived health were associated with family history., Conclusions: Individuals with a family history of diseases may have lifestyles that influence their disease risk.

Purpose: Assessment of self-reported physical activity (PA) and effects on health measures., Design: Cross-sectional analysis of baseline data from a cohort study., Setting: Education and Research Towards Health study participants from Alaska and the Southwestern United States enrolled from 2004 to 2007., Subjects: Total of 10,372 American Indian and Alaskan Native people (AI/AN) of at least 18 years., Measures: Participants completed computer-assisted, self-administered questionnaires, and anthropometric and health measurements were taken of each participant., Analysis: Analysis of variance, chi2 tests, and multiple linear regressions were used., Results: Almost 23% of participants reported less than 30 minutes per week of moderate or vigorous activities. Half (49%) reported no vigorous activities. Characteristics associated with more time spent performing vigorous activity were male gender, age less than 40 years, higher income and education levels, and living in a rural area. Almost 70% of Alaskan participants and 36% of Southwest participants engaged in wild food-harvesting activities. Participants with higher levels of activity had significantly better clinical characteristics (high-density lipoprotein cholesterol, triglycerides, body mass index, and waist circumference)., Conclusion: AI/AN people engage in many different physical activities, including traditional harvesting activities. Women had lower levels of PA than men, and participation in vigorous PA was associated with better clinical characteristics. These data can be used to guide health promotion efforts in AI/AN populations.

Purpose: To estimate the prevalence of visual impairment, eye disease and eye care in the Alaska Native (AN) population, by demographic and socioeconomic factors., Methods: Population-based cross-sectional study of 3,793 AN adults aged 18-94 years enrolled in the Education and Research Towards Health (EARTH) Study from March 2004-March 2006. Data on self-reported visual impairment, cataract, glaucoma, diabetic eye disease and previous dilated eye examinations were collected using audio computer-assisted self-administered questionnaires., Results: The unadjusted prevalence of self-reported visual impairment was 8.7% (95% confidence interval (CI): 7.9-9.7), cataract 5.9% (95% CI: 5.2-6.7), glaucoma 2.5% (95% CI: 2.0-3.0) and diabetic eye disease 1.3% (95% CI: 0.9-1.7). In all cases, age-sex adjusted prevalence estimates for the AN population were greater than available estimates for the general U.S. population. Prevalence of visual impairment and each eye disease increased with age (P < 0.01). Additional factors associated with visual impairment were education and annual household income. Overall, 70.0% (95% CI: 68.5-71.6) of participants reported a dilated eye examination within the previous two years. Dilated eye examination within the previous two years was associated with increasing age (P < 0.001). However, men and participants with lower formal education were less likely to report recent dilated eye examination. Among those with diabetes, only 67.7% (95% CI: 60.8-74.1) reported a dilated eye examination within the recommended previous one year., Conclusions: Self-reported visual impairment, cataract, glaucoma and diabetic eye disease are prevalent in the AN population. These data may be useful in healthcare planning and education programs.

Background: Metabolic syndrome occurs commonly in the United States. The purpose of this study was to measure the prevalence of metabolic syndrome among American Indian and Alaska Native people., Methods: We measured the prevalence rates of metabolic syndrome, as defined by the National Cholesterol Education Program, among four groups of American Indian and Alaska Native people aged 20 years and older. One group was from the southwestern United States (Navajo Nation), and three groups resided within Alaska. Prevalence rates were age-adjusted to the U.S. adult 2000 population and compared to rates for U.S. whites (National Health and Nutrition Examination Survey [NHANES] 1988-1994)., Results: Among participants from the southwestern United States, metabolic syndrome was found among 43.2% of men and 47.3% of women. Among Alaska Native people, metabolic syndrome was found among 26.5% of men and 31.2% of women. In Alaska, the prevalence rate varied by region, ranging among men from 18.9% (western Alaska) to 35.1% (southeast), and among women from 22.0% (western Alaska) to 38.4 % (southeast). Compared to U.S. whites, American Indian/Alaska Native men and women from all regions except western Alaska were more likely to have metabolic syndrome; men in western Alaska were less likely to have metabolic syndrome than U.S. whites, and the prevalence among women in western Alaska was similar to that of U.S. whites., Conclusion: The prevalence rate of metabolic syndrome varies widely among different American Indian and Alaska Native populations. Differences paralleled differences in the prevalence rates of diabetes.

Objectives: To determine the prevalence of traditional food and physical activity use and associations with cultural factors among 3,830 Alaska Native and American Indian (AN/AI) people enrolled in the Education and Research Towards Health (EARTH) Study in 3 regions of Alaska., Study Design: Cross-sectional analysis of baseline data from a cohort study., Methods: Participants (2,323 women and 1,507 men) completed a computer-assisted self-administered questionnaire that included information on diet, physical activity, life-style and cultural factors., Results: Over 92% of participants reported eating at least 1 traditional food in the past year. The top 3 traditional foods reported were fish, moose and agutaq (a mixture of berries and fat). The percentage of people who consumed traditional foods varied by region and age but not by sex (p < 0.01). Almost 70% of participants engaged in at least one traditional harvesting physical activity. Picking berries or greens, cutting/smoking fish or meat and fishing were the most common activities. Participation in traditional physical activity was highest in south-west Alaska and was higher among men than women, but did not differ by age (p < 0.01). Both traditional food and physical activity were associated with greater tribal self-identification, speaking a Native language at home, using traditional remedies and participating in or attending traditional events (p < 0.05)., Conclusions: The EARTH Study found relationships between traditional food use, physical activities, cultural activities and behaviours. Consumption of a variety of traditional foods and participation in traditional physical activities remain an important part of the contemporary Alaska Native life-style. Efforts to promote and sustain these foods and activities in AN/AI populations may lead to improved health outcomes.

Purpose: The purpose of this study was to examine the prevalence rates for cervical, breast, and colorectal cancer screening among American Indian and Alaska Native people living in Alaska and in the Southwest US, and to investigate predictive factors associated with receiving each of the cancer screening tests., Methods: We used the Education and Research Towards Health (EARTH) Study to measure self-reported cancer screening prevalence rates among 11,358 study participants enrolled in 2004-2007. We used prevalence odds ratios to examine demographic, lifestyle and medical factors associated with receiving age- and sex-appropriate cancer screening tests., Results: The prevalence rates of all the screening tests were higher in Alaska than in the Southwest. Pap test in the past 3 years was reported by 75.1% of women in Alaska and 64.6% of women in the Southwest. Mammography in the past 2 years was reported by 64.6% of women aged 40 years and older in Alaska and 44.0% of those in the Southwest. Colonoscopy or sigmoidoscopy in the past 5 years was reported by 41.1% of study participants aged 50 years and older in Alaska and by 11.7% of those in the Southwest US. Multivariate analysis found that location (Alaska versus the Southwest), higher educational status, income and the presence of one or more chronic medical condition predicted each of the three screening tests. Additional predictors of Pap test were age (women aged 25-39 years more likely to be screened than older or younger women), marital status (ever married more likely to be screened), and language spoken at home (speakers of American Indian Alaska Native language only less likely to be screened). Additional predictors of mammography were age (women aged 50 years and older were more likely to be screened than those aged 40-49 years), positive family history of breast cancer, use of smokeless tobacco (never users more likely to be screened), and urban/rural residency (urban residents more likely to be screened). Additional predictors of colonoscopy/sigmoidoscopy were age (men and women aged 60 years and older slightly more likely to be screened than those aged 50-59 years), family history of any cancer, family history of colorectal cancer, former smoking, language spoken at home (speakers of American Indian Alaska Native language less likely to be screened), and urban/rural residence (urban residents more likely to be screened)., Conclusion: Programs to improve screening among American Indian and Alaska Native people should include efforts to reach individuals of lower socioeconomic status and who do not have regular contact with the medical care system. Special attention should be made to identify and provide needed services to those who live in rural areas, and to those living in the Southwest US.

High prevalence and severity of rheumatoid arthritis (RA) with an early age of onset have previously been described in Alaska Native and American Indian (AN/AI) populations. The contribution of HLA-DRB1 alleles encoding a similar amino acid sequence, referred to as the shared epitope (SE), to RA risk is well recognized in multiple populations worldwide. DRB1*1402 allele is the major SE-encoding allele in AN/AI populations. However, DRB1*1402 is highly prevalent in healthy Alaska Natives of Southeast Alaska (AN), with no significant difference from RA patients, indicating this allele alone is not informative for defining genetic risk and non-human leukocyte antigen (non-HLA) genes are likely important in AN. We sought to deep resequence the human major histocompatibility complex (MHC) to characterize the single-nucleotide polymorphism (SNP) haplotypes within this region in RA cases and controls in AN. Approximately 99 kb of the MHC was resequenced with 95 amplicons throughout this region. Thirty-four cases and 74 controls were examined. A total of 696 SNPs were discovered from 85 of the selected 95 amplicons. Disease association signals were detected for nine of the 95 amplicons analyzed. Increased risk of RA was associated with five amplicons in the class I, class II or class III region and resistance to disease with four amplicons in the class I region. Our results indicate that non-HLA MHC genes and/or unknown exogenous factors likely modulate risk of RA in the AN population.

Objectives: To examine whether oral contraceptive use is associated with the presence of serum rheumatoid factor in women of reproductive age without rheumatoid arthritis., Methods: 304 women selected from parents of children who were at increased risk of developing type 1 diabetes were studied, because they were enriched with the human leucocyte antigen-DR4 allele, a susceptibility marker for both type 1 diabetes and rheumatoid arthritis. Participants visited a clinic where blood was drawn for rheumatoid factor testing, and exposure data were collected via questionnaires. A medical history and joint examination were performed to rule out rheumatoid arthritis. Participants and examiners were unaware of the participants' rheumatoid factor status at the time of examination and questionnaire., Results: Use of oral contraceptives at any time was inversely associated with rheumatoid factor positivity (adjusted odds ratio (OR) 0.2, 95% confidence interval (CI) 0.07 to 0.52) independent of age, education and smoking. Smoking > or = 20 pack-years was also associated with rheumatoid factor positivity (adjusted OR 56.38, 95% CI 4.31 to 736.98) compared with never smoking. Smoking 1-19 pack-years was not associated with a positive rheumatoid factor., Conclusions: Our results suggest that oral contraceptive use, and possibly cigarette smoking, act early in the development of the immune dysregulation that occurs in rheumatoid arthritis.

Background and Objectives: An increased prevalence of rheumatoid arthritis (RA) has been reported in several American Indian and Alaska Native (AI/AN) populations. This article reviews the prevalence of RA in these populations, including clinical and serologic features., Methods: References were taken from Medline through November 2003, in addition to the Arctic Health Literature Database and the American Indian and Alaska Native Health Bibliography., Results: Published articles reveal an increased prevalence of RA in the Tlingit, Yakima, Pima, and Chippewa Indians. Clinically the disease in these groups is often severe, with early age of onset, high frequency of radiographic erosions, rheumatoid nodules, and positive rheumatoid factor. Studies of HLA alleles in cases and controls have found a high frequency of HLA DRB1*1402., Conclusions: The increased prevalence of RA and more severe disease in specific AI/AN populations suggest an important genetic influence on the development of RA in AI/AN populations. A high frequency of specific high-risk HLA alleles in these populations may account for some of the increased risk, but other genetic factors are likely to contribute. Environmental factors have not been studied in detail, but may also play an important role., Relevance: Understanding the patterns and burden of disease in AI/AN populations may contribute to understanding the etiology of RA and to the development of preventive strategies.

Objective: Anti-cyclic citrullinated peptide (anti-CCP) antibodies have been detected in patients with juvenile rheumatoid arthritis (JRA), particularly in those with polyarticular, rheumatoid factor (RF)-positive JRA. Our objectives were to determine whether anti-CCP antibodies are associated with HLA-DR4 in children with polyarticular JRA, whether anti-CCP antibodies are associated with clinical features of disease, and whether affected sibling pairs (ASPs) with JRA are concordant for this antibody., Methods: Stored serum samples obtained from 230 HLA-typed patients with JRA (77 with polyarticular-onset disease and 153 with pauciarticular- or systemic-onset disease), 100 JRA ASPs, and 688 healthy children were tested for anti-CCP antibodies and RF., Results: Thirteen percent of the patients with polyarticular-onset JRA and 2% of the other JRA patients exhibited anti-CCP antibodies, compared with only 0.6% of the controls. Fifty-seven percent of RF-positive patients with polyarticular-onset JRA had anti-CCP antibodies. HLA-DR4-positive patients with polyarticular-onset JRA were more likely to have anti-CCP antibodies than were those without HLA-DR4 alleles (odds ratio [OR] 5.20, 95% confidence interval [95% CI] 1.30-20.9). Anti-CCP antibodies were associated with polyarticular onset (OR 7.46, 95% CI 1.99-28.0), a polyarticular disease course (OR 9.78, 95% CI 1.25-76.7), and erosive disease (OR 14.3, 95% CI 3.01-67.9). Concordance rates for anti-CCP antibodies among ASPs were statistically significant., Conclusion: These data demonstrate increased anti-CCP antibody formation in HLA-DR4-positive patients with polyarticular-onset JRA. The overall prevalence of anti-CCP antibodies in JRA is low, but a substantial proportion of RF-positive patients with polyarticular-onset JRA have these antibodies. Anti-CCP antibodies in JRA are associated with polyarticular onset, a polyarticular course, and erosive disease.