Population-based prevalence and incidence estimates of mixed connective tissue disease from the Manhattan Lupus Surveillance Program.

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.

Factors Associated with Telemedicine Use for Chronic Disease Specialty Care in the Alaska Tribal Health System, 2015-2019.

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.

Perspectives of Patients and Providers on the Use of Telemedicine for Chronic Disease Specialty Care in the Alaska Tribal Health System.

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.

Views of Patients and Providers on the Use of Telemedicine for Chronic Disease Specialty Care in the Alaska Native Population.

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.

Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers.

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.

Molecular basis for increased susceptibility of Indigenous North Americans to seropositive rheumatoid arthritis.

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/Phe13ß stratifies with ACPA-positive RA, while His13ßSer 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 His13ßSer 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-64Arg59-71, vimentin-64Cit59-71 and fibrinogen ß-74Cit69-81 were solved using X-ray crystallography. Vimentin-64Cit59-71-specific and vimentin59-71-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 ß-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 His13ßSer 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 vimentin59-71 were observed in patients with HLA-DRB1*14:02+ RA and at-risk ACPA- first-degree relatives. HLA-DRB1*14:02-vimentin59-71-specific and HLA-DRB1*14:02-vimentin-64Cit59-71-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.

Autoimmune hepatitis in the Alaska Native population: autoantibody profile and HLA associations.

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.

An assessment of cardiovascular disease hospitalizations and disparities by race in patients with rheumatic disease hospitalizations in Alaska, 2015-2018.

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.

Disparities in total knee and total hip arthroplasty rates in the population of Alaska, 2015-2018.

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 to non-AN/AI individuals in Alaska and investigate differences in characteristics and outcomes by race. METHODS: We used hospital discharge data from the Alaska Health Facilities Data Reporting Program from 2015-2018. 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 8131 arthroplasty procedures (4594 primary TKA, 2791 primary THA, 378 revision TKA, 368 revision THA). Primary TKA and THA were less likely in people of AN/AI or Other race compared to people of White race, with some heterogeneity in the Other race category. In multivariable models, the adjusted rate ratio for AN/AI compared to White race for TKA was 0.70 (95% confidence interval (CI) 0.60-0.82) and 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, 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.

Hospitalized Infections in Patients With Rheumatic Disease Hospitalizations in Alaska, 2015-2018.

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.

Hospitalizations Associated With Rheumatic Disease in Alaska, 2015-2018.

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.

Health care utilization in Alaska Native people receiving chronic disease specialty care by videoconsultation compared to propensity-matched controls.

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.

Outcomes and Quality of Care in Rheumatoid Arthritis With or Without Video Telemedicine Follow-Up Visits.

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.

Azathioprine metabolite measurements are not useful in following treatment of autoimmune hepatitis in Alaska Native and other non-Caucasian people.

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.

Strategies for successful retention of Alaska Native and American Indian study participants.

This paper reports the strategies used to track and follow 3,828 Alaska Native and American Indian study participants in the city of Anchorage and more rural areas of Alaska and provides characteristics of respondents and non-respondents. Over 88% were successfully followed-up, with 49% of respondents completed in three or fewer attempts. Follow-up completion rates were significantly higher for women, those living in a rural area, over age 55, married, employed, having a higher household income, and at current residence for more than five years. Follow-up of large numbers of Alaska Native and American Indian people living in geographically diverse areas is feasible, although challenging. Successful strategies to avoid attrition include using telephones as the primary method of contact; using a computerized contact relationship management system to track efforts and manage data; obtaining contact information from participant contact networks, medical records, and community networks; using local village interviewers to contact participants without telephone service; and mailing paper questionnaires to participants who are incarcerated or use social services.

Prevalence of Systemic Lupus Erythematosus in the United States: Estimates From a Meta-Analysis of the Centers for Disease Control and Prevention National Lupus Registries.

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.

Incidence rates of systemic lupus erythematosus in the USA: estimates from a meta-analysis of the Centers for Disease Control and Prevention national lupus registries.

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.

Development of a Set of Lupus-Specific, Ambulatory Care-Sensitive, Potentially Preventable Adverse Conditions: A Delphi Consensus Study.

OBJECTIVE: Individuals with systemic lupus erythematosus (SLE) are at high risk for infections and SLE- and medication-related complications. The present study was undertaken to define a set of SLE-specific adverse outcomes that could be prevented, or their complications minimized, if timely, effective ambulatory care had been received. METHODS: We used a modified Delphi process beginning with a literature review and key informant interviews to select initial SLE-specific potentially preventable conditions. We assembled a panel of 16 nationally recognized US-based experts from 8 subspecialties. Guided by the RAND-UCLA Appropriateness Method, we held 2 survey rounds with controlled feedback and an interactive webinar to reach consensus regarding preventability and importance on a population level for a set of SLE-specific adverse conditions. In a final round, the panelists endorsed the potentially preventable conditions. RESULTS: Thirty-five potential conditions were initially proposed; 62 conditions were ultimately considered during the Delphi process. The response rate was 100% for both survey rounds, 88% for the webinar, and 94% for final approval. The 25 SLE-specific conditions meeting consensus as potentially preventable and important on a population level fell into 4 categories: vaccine-preventable illnesses (6 conditions), medication-related complications (8 conditions), reproductive health-related complications (6 conditions), and SLE-related complications (5 conditions). CONCLUSION: We reached consensus on a diverse set of adverse outcomes relevant to SLE patients that may be preventable if patients receive high-quality ambulatory care. This set of outcomes may be studied at the health system level to determine how to best allocate resources and improve quality to reduce avoidable outcomes and disparities among those at highest risk.

Tobacco use among Alaska Native people in the EARTH study.

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.

Associations among body mass index, waist circumference, and health indicators in American Indian and Alaska Native adults.

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.