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1.
BMC Rheumatol ; 8(1): 7, 2024 Feb 18.
Article in English | MEDLINE | ID: mdl-38369541

ABSTRACT

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.

3.
ACR Open Rheumatol ; 5(3): 106-113, 2023 Mar.
Article in English | MEDLINE | ID: mdl-36683557

ABSTRACT

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.

4.
Rheumatology (Oxford) ; 62(8): 2845-2849, 2023 08 01.
Article in English | MEDLINE | ID: mdl-36538873

ABSTRACT

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.


Subject(s)
Lupus Erythematosus, Systemic , Mixed Connective Tissue Disease , Myositis , Humans , Mixed Connective Tissue Disease/diagnosis , Mixed Connective Tissue Disease/epidemiology , Prevalence , Incidence , Antibodies, Antinuclear
5.
J Telemed Telecare ; : 1357633X221107999, 2022 Jun 22.
Article in English | MEDLINE | ID: mdl-35733375

ABSTRACT

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.

6.
ACR Open Rheumatol ; 4(6): 520-527, 2022 Jun.
Article in English | MEDLINE | ID: mdl-35305078

ABSTRACT

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.

7.
Arthritis Care Res (Hoboken) ; 74(3): 484-492, 2022 03.
Article in English | MEDLINE | ID: mdl-33053261

ABSTRACT

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.


Subject(s)
Arthritis, Rheumatoid/therapy , Telemedicine/standards , Alaska/epidemiology , Female , Humans , Longitudinal Studies , Male , Outcome Assessment, Health Care , Rheumatology/methods , Rheumatology/standards , Surveys and Questionnaires , Telemedicine/statistics & numerical data
8.
Telemed J E Health ; 28(4): 535-543, 2022 04.
Article in English | MEDLINE | ID: mdl-34375148

ABSTRACT

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.


Subject(s)
COVID-19 , Telemedicine , Alaska , COVID-19/epidemiology , Chronic Disease , Humans , Pandemics
9.
Telemed J E Health ; 28(5): 682-689, 2022 05.
Article in English | MEDLINE | ID: mdl-34515534

ABSTRACT

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.


Subject(s)
COVID-19 , Telemedicine , Alaska , COVID-19/epidemiology , Chronic Disease , Female , Humans , Male , Pandemics
10.
Lupus Sci Med ; 8(1)2021 12.
Article in English | MEDLINE | ID: mdl-34921094

ABSTRACT

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.


Subject(s)
Lupus Erythematosus, Systemic , Centers for Disease Control and Prevention, U.S. , Ethnicity , Female , Humans , Incidence , Lupus Erythematosus, Systemic/epidemiology , Male , Registries , United States/epidemiology
11.
Arthritis Rheumatol ; 73(6): 991-996, 2021 06.
Article in English | MEDLINE | ID: mdl-33474834

ABSTRACT

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.


Subject(s)
Lupus Erythematosus, Systemic/epidemiology , Black or African American , Asian , Centers for Disease Control and Prevention, U.S. , Hispanic or Latino , Humans , Lupus Erythematosus, Systemic/ethnology , Native Hawaiian or Other Pacific Islander , Prevalence , Registries , Sex Distribution , United States/epidemiology , White People , American Indian or Alaska Native
12.
Telemed J E Health ; 27(1): 82-89, 2021 01.
Article in English | MEDLINE | ID: mdl-32286156

ABSTRACT

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.


Subject(s)
Telemedicine , Chronic Disease , Delivery of Health Care , Humans , Rural Population
13.
Rheum Dis Clin North Am ; 46(4): 651-660, 2020 Nov.
Article in English | MEDLINE | ID: mdl-32981642

ABSTRACT

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.


Subject(s)
American Indian or Alaska Native , Health Status Disparities , Rheumatic Diseases , Cost of Illness , Delivery of Health Care , Humans , Rheumatic Diseases/epidemiology , Rheumatic Diseases/ethnology , United States/epidemiology
14.
Genet Med ; 22(12): 1935-1943, 2020 12.
Article in English | MEDLINE | ID: mdl-32839571

ABSTRACT

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.


Subject(s)
Biomedical Research , Indians, North American , /genetics , Genomics , Humans , Information Dissemination
15.
Arthritis Care Res (Hoboken) ; 72(8): 1152-1158, 2020 08.
Article in English | MEDLINE | ID: mdl-31150159

ABSTRACT

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.


Subject(s)
/statistics & numerical data , Arthritis, Juvenile/ethnology , Arthritis, Juvenile/epidemiology , Adolescent , Alaska/epidemiology , Anti-Citrullinated Protein Antibodies/blood , Antibodies, Antinuclear/blood , Arthritis, Juvenile/blood , Child , Child, Preschool , Female , HLA-B27 Antigen/blood , Humans , Male , Prevalence , Rheumatoid Factor/blood
16.
Arthritis Care Res (Hoboken) ; 72(10): 1404-1409, 2020 10.
Article in English | MEDLINE | ID: mdl-31421020

ABSTRACT

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.


Subject(s)
Arthritis, Rheumatoid/therapy , Rheumatology/statistics & numerical data , Telemedicine/statistics & numerical data , Adult , Aftercare , Aged , Female , Humans , Male , Middle Aged , Severity of Illness Index
17.
Arthritis Rheumatol ; 71(9): 1494-1503, 2019 09.
Article in English | MEDLINE | ID: mdl-30861615

ABSTRACT

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.


Subject(s)
/statistics & numerical data , Arthritis, Rheumatoid/ethnology , Arthritis, Rheumatoid/epidemiology , Family , Indians, North American/statistics & numerical data , Adult , Alaska/epidemiology , Anti-Citrullinated Protein Antibodies/blood , Arthritis, Rheumatoid/immunology , Autoantibodies/blood , Canada/epidemiology , Female , Genetic Predisposition to Disease/epidemiology , Humans , Incidence , Longitudinal Studies , Male , Prevalence , Prospective Studies , Rheumatoid Factor/blood
18.
Semin Arthritis Rheum ; 49(1): 145-155, 2019 08.
Article in English | MEDLINE | ID: mdl-30598333

ABSTRACT

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.


Subject(s)
Arthritis/ethnology , Community Participation , Indigenous Peoples , Research , Australia , Canada , Delivery of Health Care , Health Status Disparities , Humans , New Zealand , United States
19.
Ann Rheum Dis ; 76(11): 1915-1923, 2017 11.
Article in English | MEDLINE | ID: mdl-28801345

ABSTRACT

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.


Subject(s)
/genetics , Arthritis, Rheumatoid/ethnology , Arthritis, Rheumatoid/genetics , Genetic Predisposition to Disease/ethnology , HLA-DRB1 Chains/genetics , Indians, North American/genetics , Alaska/ethnology , Alleles , Arginine/genetics , Arginine/immunology , Autoantibodies/blood , Autoantibodies/immunology , CD4-Positive T-Lymphocytes/immunology , Canada/ethnology , Case-Control Studies , Citrulline/genetics , Citrulline/immunology , Female , Flow Cytometry , Genotype , Humans , Male , Peptides, Cyclic/immunology , Polymorphism, Genetic , Risk Factors , Vimentin/genetics
20.
Semin Arthritis Rheum ; 47(3): 445-450, 2017 12.
Article in English | MEDLINE | ID: mdl-28532574

ABSTRACT

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.


Subject(s)
Antibodies, Antinuclear/blood , Arthritis, Infectious/blood , Autoantibodies/blood , Hepacivirus/immunology , Hepatitis C, Chronic/blood , Adult , Age Distribution , Alaska/epidemiology , Analysis of Variance , Arthritis, Infectious/diagnosis , Arthritis, Infectious/epidemiology , Arthritis, Infectious/virology , Cross-Sectional Studies , Diagnosis, Differential , Female , Hepatitis C, Chronic/complications , Hepatitis C, Chronic/epidemiology , Humans , Longitudinal Studies , Male , Middle Aged , Self Report
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