Pub Date : 2025-12-01DOI: 10.3899/jrheum.2025-0428
Norma K Biln, Nick Bansback, Charlyn Black, Kam Shojania, Daphne Guh, Mark J Harrison
Objective: Early diagnosis and treat-to-target strategies improve outcomes for patients with inflammatory arthritis (IA). One approach for reducing diagnostic delay is using standardized patient-completed questionnaires to support referral decisions. This study evaluated the discriminatory referral performance of 2 validated questionnaires in newly referred rheumatology patients in British Columbia, Canada.
Methods: Patients completed the Early Inflammatory Arthritis Questionnaire (EIAQ) and Case Finding Axial Spondyloarthritis (CaFaSpA) questionnaire. Predictive scores for IA were calculated using existing algorithms and compared to the reference standard of their rheumatologist diagnosis. Discriminative performance was tested using the area under the receiver-operating characteristics curve (AUC), and diagnostic performance was tested using metrics, including sensitivity and specificity. Exploratory regression models were used to predict IA with different combinations of questionnaire questions.
Results: Of 92 participants, 30 (33%) had time-sensitive IA (TS-IA), 35 (38%) other IA, and 27 (29%) non-IA. Time from referral to rheumatologist visits for patients with TS-IA was 44 days (IQR 28-83), 69 (IQR 40-102) for "other IA," 65 (IQR 34-99) for "non-IA," and was longer for women (+ 9 days) and in nonmetropolitan areas (+ 16 days). Only 7 patients had axial spondyloarthritis, precluding discriminative analysis of the CaFaSpA. The EIAQ had an AUC of 0.59 (95% CI 0.49-0.68), sensitivity of 33% (95% CI 19-51%), and specificity of 84% (95% CI 73-91); alternate algorithms based on EIAQ and CaFaSpA questions delivered AUCs up to 0.80 (95% CI 0.68-0.90).
Conclusion: The results support the utility and feasibility of routine collection of EIAQ and CaFaSpA questionnaires for discriminating patients with IA from those with non-IA.
目的:早期诊断和靶向治疗策略可改善炎症性关节炎(IA)患者的预后。减少诊断延误的一种方法是使用标准化的患者填写问卷来支持转诊决定。本研究评估了加拿大不列颠哥伦比亚省新转诊的风湿病患者的2份有效问卷的歧视性转诊表现。方法:患者填写早期炎性关节炎问卷(EIAQ)和病例发现轴性脊柱炎问卷(CaFaSpA)。使用现有算法计算IA的预测评分,并将其与风湿病学家诊断的参考标准进行比较。使用受试者操作特征曲线下面积(AUC)测试鉴别性能,使用包括敏感性和特异性在内的指标测试诊断性能。采用探索性回归模型对不同问卷问题组合进行IA预测。结果:在92名参与者中,30名(33%)患有时间敏感性IA (TS-IA), 35名(38%)患有其他IA, 27名(29%)非IA。TS-IA患者从转诊到风湿病专家就诊的时间为44天(IQR 28-83),“其他IA”为69天(IQR 40-102),“非IA”为65天(IQR 34-99),女性(+ 9天)和非大都市地区(+ 16天)的时间更长。只有7例患者患有轴性脊柱炎,排除了CaFaSpA的判别分析。EIAQ的AUC为0.59 (95% CI 0.49-0.68),敏感性为33% (95% CI 19-51%),特异性为84% (95% CI 73-91);基于EIAQ和CaFaSpA问题的替代算法的auc高达0.80 (95% CI 0.68-0.90)。结论:常规收集EIAQ和CaFaSpA问卷用于鉴别IA患者和非IA患者的有效性和可行性。
{"title":"The Patient Self-Administered Inflammatory Arthritis Detection Study.","authors":"Norma K Biln, Nick Bansback, Charlyn Black, Kam Shojania, Daphne Guh, Mark J Harrison","doi":"10.3899/jrheum.2025-0428","DOIUrl":"https://doi.org/10.3899/jrheum.2025-0428","url":null,"abstract":"<p><strong>Objective: </strong>Early diagnosis and treat-to-target strategies improve outcomes for patients with inflammatory arthritis (IA). One approach for reducing diagnostic delay is using standardized patient-completed questionnaires to support referral decisions. This study evaluated the discriminatory referral performance of 2 validated questionnaires in newly referred rheumatology patients in British Columbia, Canada.</p><p><strong>Methods: </strong>Patients completed the Early Inflammatory Arthritis Questionnaire (EIAQ) and Case Finding Axial Spondyloarthritis (CaFaSpA) questionnaire. Predictive scores for IA were calculated using existing algorithms and compared to the reference standard of their rheumatologist diagnosis. Discriminative performance was tested using the area under the receiver-operating characteristics curve (AUC), and diagnostic performance was tested using metrics, including sensitivity and specificity. Exploratory regression models were used to predict IA with different combinations of questionnaire questions.</p><p><strong>Results: </strong>Of 92 participants, 30 (33%) had time-sensitive IA (TS-IA), 35 (38%) other IA, and 27 (29%) non-IA. Time from referral to rheumatologist visits for patients with TS-IA was 44 days (IQR 28-83), 69 (IQR 40-102) for \"other IA,\" 65 (IQR 34-99) for \"non-IA,\" and was longer for women (+ 9 days) and in nonmetropolitan areas (+ 16 days). Only 7 patients had axial spondyloarthritis, precluding discriminative analysis of the CaFaSpA. The EIAQ had an AUC of 0.59 (95% CI 0.49-0.68), sensitivity of 33% (95% CI 19-51%), and specificity of 84% (95% CI 73-91); alternate algorithms based on EIAQ and CaFaSpA questions delivered AUCs up to 0.80 (95% CI 0.68-0.90).</p><p><strong>Conclusion: </strong>The results support the utility and feasibility of routine collection of EIAQ and CaFaSpA questionnaires for discriminating patients with IA from those with non-IA.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145656268","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 10.3899/jrheum.2025-1159
Kevin D Deane
{"title":"Understanding the Resolution of Clinically Suspect Arthralgia: Moving Forward, but Challenges Remain.","authors":"Kevin D Deane","doi":"10.3899/jrheum.2025-1159","DOIUrl":"https://doi.org/10.3899/jrheum.2025-1159","url":null,"abstract":"","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145656281","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 10.3899/jrheum.2025-0544
Richard S Panush
{"title":"Science Imperiled.","authors":"Richard S Panush","doi":"10.3899/jrheum.2025-0544","DOIUrl":"10.3899/jrheum.2025-0544","url":null,"abstract":"","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"1189-1191"},"PeriodicalIF":3.4,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145304069","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 10.3899/jrheum.2025-0934
Natalie A Davis, Jiaqi Wang, Xiaosong Wang, Liya S Getachew, Lauren A O'Keeffe, Grace Qian, Kevin T Mueller, Madison Negron, Alene A Saavedra, Naomi J Patel, Jeffrey A Sparks
Objective: To investigate respiratory syncytial virus (RSV) vaccine uptake, associations, and breakthrough infection among patients with systemic autoimmune rheumatic diseases (SARDs).
Methods: We performed a retrospective cohort study investigating RSV vaccination among patients with SARDs at Mass General Brigham (Boston, MA). We identified all patients with SARDs who were 60 years or older and thus eligible to receive the RSV vaccine between 5/2023 to 2/2025. We used multivariable logistic regression to identify factors associated with RSV vaccination. Among the vaccinated, we described documented cases of laboratory-confirmed breakthrough RSV infection.
Results: Among 10,587 patients with SARDs (median age 71.7 years, 72.4% female) eligible for RSV vaccination, 1,075 (10.2%) received RSV vaccination. Factors associated with higher odds of RSV vaccination included higher median census-tract household income and comorbidities such as cancer and interstitial lung disease. Associations with lower odds of RSV vaccination included Black race, lack of previous influenza or COVID-19 vaccinations, and glucocorticoid use. RSV vaccination was not associated with specific SARD types or disease-modifying antirheumatic drugs (DMARDs), including CD20 inhibitors. Among the 1,075 who were vaccinated, there were 9 (0.8%) documented cases of RSV breakthrough infection (2 hospitalizations and no deaths).
Conclusion: Only 10.2% of eligible SARD patients received RSV vaccination. Glucocorticoid users were less likely to receive RSV vaccination, while specific SARD types and DMARDs were not associated. While some predictors of vaccine uptake are observed in this dataset, there are many unmeasured factors that may play a role in vaccine uptake. There were few documented breakthrough infections and no deaths. Future studies are needed to optimize RSV vaccine use and establish safety and efficacy in this vulnerable population.
{"title":"Investigating factors associated with respiratory syncytial virus vaccination and breakthrough infection among patients with systemic autoimmune rheumatic diseases.","authors":"Natalie A Davis, Jiaqi Wang, Xiaosong Wang, Liya S Getachew, Lauren A O'Keeffe, Grace Qian, Kevin T Mueller, Madison Negron, Alene A Saavedra, Naomi J Patel, Jeffrey A Sparks","doi":"10.3899/jrheum.2025-0934","DOIUrl":"https://doi.org/10.3899/jrheum.2025-0934","url":null,"abstract":"<p><strong>Objective: </strong>To investigate respiratory syncytial virus (RSV) vaccine uptake, associations, and breakthrough infection among patients with systemic autoimmune rheumatic diseases (SARDs).</p><p><strong>Methods: </strong>We performed a retrospective cohort study investigating RSV vaccination among patients with SARDs at Mass General Brigham (Boston, MA). We identified all patients with SARDs who were 60 years or older and thus eligible to receive the RSV vaccine between 5/2023 to 2/2025. We used multivariable logistic regression to identify factors associated with RSV vaccination. Among the vaccinated, we described documented cases of laboratory-confirmed breakthrough RSV infection.</p><p><strong>Results: </strong>Among 10,587 patients with SARDs (median age 71.7 years, 72.4% female) eligible for RSV vaccination, 1,075 (10.2%) received RSV vaccination. Factors associated with higher odds of RSV vaccination included higher median census-tract household income and comorbidities such as cancer and interstitial lung disease. Associations with lower odds of RSV vaccination included Black race, lack of previous influenza or COVID-19 vaccinations, and glucocorticoid use. RSV vaccination was not associated with specific SARD types or disease-modifying antirheumatic drugs (DMARDs), including CD20 inhibitors. Among the 1,075 who were vaccinated, there were 9 (0.8%) documented cases of RSV breakthrough infection (2 hospitalizations and no deaths).</p><p><strong>Conclusion: </strong>Only 10.2% of eligible SARD patients received RSV vaccination. Glucocorticoid users were less likely to receive RSV vaccination, while specific SARD types and DMARDs were not associated. While some predictors of vaccine uptake are observed in this dataset, there are many unmeasured factors that may play a role in vaccine uptake. There were few documented breakthrough infections and no deaths. Future studies are needed to optimize RSV vaccine use and establish safety and efficacy in this vulnerable population.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145656330","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 10.3899/jrheum.2025-1117
Peter T Nash
{"title":"What Predicts Initial Biologic Disease-Modifying Antirheumatic Drug Failure in Psoriatic Arthritis and How Common Is It?","authors":"Peter T Nash","doi":"10.3899/jrheum.2025-1117","DOIUrl":"https://doi.org/10.3899/jrheum.2025-1117","url":null,"abstract":"","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145656338","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 10.3899/jrheum.2025-0459
Mats L Junek, Rahul Chanchlani, Amadeo R Rodriguez, Nader Khalidi, Amber O Molnar
Objective: There are limited data concerning outcomes in those with giant cell arteritis (GCA)-associated vision changes (GCAVCs). We estimated the association of intravenous (IV), compared to oral, glucocorticoids (GCs) with outcomes in GCAVCs.
Methods: We conducted a retrospective cohort study at a tertiary healthcare facility in Ontario, Canada. Individuals aged ≥ 50 years with an International Classification of Diseases, 10th revision, diagnostic code for GCA associated with a healthcare visit between November 2017 to December 2023 were identified for inclusion. Diagnoses of GCA were verified as the final diagnosis of the treating clinician and were required to be supported by histologic, radiographic, and/or biochemical evidence of inflammatory vasculopathy. GCAVCs were identified by clinical assessments. Treatment exposures were defined as whether the individual was first exposed to IV or oral GCs. The primary outcome was reported visual improvement after treatment. We used logistic regression to estimate treatment effects, adjusting for demographic and disease factors.
Results: In 289 patients with GCA, 77 (26.6%) had GCAVCs. Of these, 70.1% of GCAVCs led to permanent vision loss, and visual recovery was seen in 16% of participants. We found no difference in outcomes for those first treated with IV vs oral GCs (adjusted odds ratios 0.43-1.72; 95% CI 0.02-123.68).
Conclusion: GCAVCs are common and frequently associated with permanent vision loss. Although the precision of our results was limited by sample size, we did not find evidence that receiving IV GCs before oral GCs was associated with visual improvement in GCAVCs.
{"title":"Assessment of Giant Cell Arteritis-Associated Visual Outcomes at a Tertiary Hospital in Ontario, Canada.","authors":"Mats L Junek, Rahul Chanchlani, Amadeo R Rodriguez, Nader Khalidi, Amber O Molnar","doi":"10.3899/jrheum.2025-0459","DOIUrl":"10.3899/jrheum.2025-0459","url":null,"abstract":"<p><strong>Objective: </strong>There are limited data concerning outcomes in those with giant cell arteritis (GCA)-associated vision changes (GCAVCs). We estimated the association of intravenous (IV), compared to oral, glucocorticoids (GCs) with outcomes in GCAVCs.</p><p><strong>Methods: </strong>We conducted a retrospective cohort study at a tertiary healthcare facility in Ontario, Canada. Individuals aged ≥ 50 years with an International Classification of Diseases, 10th revision, diagnostic code for GCA associated with a healthcare visit between November 2017 to December 2023 were identified for inclusion. Diagnoses of GCA were verified as the final diagnosis of the treating clinician and were required to be supported by histologic, radiographic, and/or biochemical evidence of inflammatory vasculopathy. GCAVCs were identified by clinical assessments. Treatment exposures were defined as whether the individual was first exposed to IV or oral GCs. The primary outcome was reported visual improvement after treatment. We used logistic regression to estimate treatment effects, adjusting for demographic and disease factors.</p><p><strong>Results: </strong>In 289 patients with GCA, 77 (26.6%) had GCAVCs. Of these, 70.1% of GCAVCs led to permanent vision loss, and visual recovery was seen in 16% of participants. We found no difference in outcomes for those first treated with IV vs oral GCs (adjusted odds ratios 0.43-1.72; 95% CI 0.02-123.68).</p><p><strong>Conclusion: </strong>GCAVCs are common and frequently associated with permanent vision loss. Although the precision of our results was limited by sample size, we did not find evidence that receiving IV GCs before oral GCs was associated with visual improvement in GCAVCs.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"1274-1280"},"PeriodicalIF":3.4,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144976750","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-12-01DOI: 10.3899/jrheum.2025-0768
Gabrielle Sraka, Zeenat Ladak, Celia Laur, Daphne To, Laura Oliva, Carrie Barnes, Catherine Hofstetter, Jessica Widdifield, J Carter Thorne, Lauren K King
Objective: Interdisciplinary team-based models of rheumatology care, where rheumatologists and interdisciplinary healthcare professionals deliver care collaboratively, offer a promising solution to improve integrated care, however an understanding of patients' experiences with this approach remains limited. We explored patients' perspectives on receiving care through an interdisciplinary team-based model.
Methods: This was a qualitative study informed by qualitative description. We conducted a secondary analysis of semi-structured interviews with patients receiving care through an interdisciplinary model in Ontario, Canada. The interviews explored patients' experiences with team-based care and perceived impact on disease management. We inductively coded interview transcripts and constructed themes using thematic analysis.
Results: Among fifteen participants, 47% were female, ten (67%) had inflammatory arthritis, three (20%) had other inflammatory rheumatic diseases, and two (13%) had osteoarthritis. We identified five overarching themes: 1) Educational Empowerment, 2) Unhurried Thoroughness, 3) Responsive Care, 4) Timely Care, and 5) Personalized Care through Multi-specialized Collaboration. Participants perceived team-based care to offer enhanced access, including prompt appointments and timely responses to phone calls, attributed to the involvement of multiple health professionals. Participants described care as comprehensive and proactive, addressing needs beyond what a rheumatologist alone could provide. Longer consultations enabled thorough assessments, education, and support across all aspects of disease management. Participants valued the integrated "one-stop-shop" model, which reduced the number of external referrals and separate appointments.
Conclusion: Patients valued interdisciplinary team-based rheumatology care for improving care access and delivering integrated, convenient, comprehensive care that holistically addressed their needs. These results support wider implementation.
{"title":"\"It's Like a One-Stop-Shop\": A Qualitative Study Exploring Patient Experiences with Interdisciplinary Team-Based Rheumatology Care.","authors":"Gabrielle Sraka, Zeenat Ladak, Celia Laur, Daphne To, Laura Oliva, Carrie Barnes, Catherine Hofstetter, Jessica Widdifield, J Carter Thorne, Lauren K King","doi":"10.3899/jrheum.2025-0768","DOIUrl":"https://doi.org/10.3899/jrheum.2025-0768","url":null,"abstract":"<p><strong>Objective: </strong>Interdisciplinary team-based models of rheumatology care, where rheumatologists and interdisciplinary healthcare professionals deliver care collaboratively, offer a promising solution to improve integrated care, however an understanding of patients' experiences with this approach remains limited. We explored patients' perspectives on receiving care through an interdisciplinary team-based model.</p><p><strong>Methods: </strong>This was a qualitative study informed by qualitative description. We conducted a secondary analysis of semi-structured interviews with patients receiving care through an interdisciplinary model in Ontario, Canada. The interviews explored patients' experiences with team-based care and perceived impact on disease management. We inductively coded interview transcripts and constructed themes using thematic analysis.</p><p><strong>Results: </strong>Among fifteen participants, 47% were female, ten (67%) had inflammatory arthritis, three (20%) had other inflammatory rheumatic diseases, and two (13%) had osteoarthritis. We identified five overarching themes: 1) Educational Empowerment, 2) Unhurried Thoroughness, 3) Responsive Care, 4) Timely Care, and 5) Personalized Care through Multi-specialized Collaboration. Participants perceived team-based care to offer enhanced access, including prompt appointments and timely responses to phone calls, attributed to the involvement of multiple health professionals. Participants described care as comprehensive and proactive, addressing needs beyond what a rheumatologist alone could provide. Longer consultations enabled thorough assessments, education, and support across all aspects of disease management. Participants valued the integrated \"one-stop-shop\" model, which reduced the number of external referrals and separate appointments.</p><p><strong>Conclusion: </strong>Patients valued interdisciplinary team-based rheumatology care for improving care access and delivering integrated, convenient, comprehensive care that holistically addressed their needs. These results support wider implementation.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145656193","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Objective: To examine demographic and geographic diversity in axial spondyloarthritis (axSpA) drug trials.
Methods: We performed a descriptive epidemiological study using ClinicalTrials.gov data. We included completed phase II-IV drug trials in adults with axSpA, conducted between 2000 and 2023, with results posted on ClinicalTrials.gov. We extracted and analyzed data on sex, race, ethnicity, trial characteristics, and trial locations.
Results: Fifty-nine trials with 16,162 participants were analyzed. Female individuals constituted 30% of participants overall: 25% in radiographic axSpA (r-axSpA) trials, 34% in axSpA trials, and 48% in nonradiographic axSpA (nr-axSpA) trials. Thirty-one trials (53%) reported race, and 12 (20%) reported both race and ethnicity. Race reporting increased from 9% of trials (2000-2010) to 53% (2011-2015) and 100% (2016-2020). Among 10,037 participants with race data, 82% were White, 15% Asian, 2% American Indian/Alaska Native, 1% Black, and 0.02% Native Hawaiian/Pacific Islander. Asian representation increased from 4% (2011-2015) to 19% (2016-2020) and American Indian/Alaska Native from 1% to 3%, whereas Black representation remained consistently low at 1%. Among 3577 patients with ethnicity data, 14% of participants were Hispanic/Latino, increasing from 1% (2011-2015) to 14% (2016-2020). Fifty-one trials with location data enrolled participants from 53 countries. Sub-Saharan Africa (0%) and South/Central Asia (2%) had the lowest geographic representation of enrollment sites.
Conclusion: The proportion of women enrolled in axSpA drug trials largely reflects disease demographics. Race and ethnicity reporting has improved over time. Whereas participation of Asian, American Indian/Alaska Native and Hispanic/Latino patients has increased, Black and Native Hawaiian/Pacific Islander representation has remained low. Future efforts should prioritize inclusivity and participation in underrepresented regions globally.
{"title":"Diversity in Axial Spondyloarthritis Drug Trials: Enrollment by Sex, Race, Ethnicity, and Geographic Region.","authors":"Mathieu Choufani, Wissam Ghusn, Maureen Dubreuil, Joerg Ermann","doi":"10.3899/jrheum.2024-1013","DOIUrl":"10.3899/jrheum.2024-1013","url":null,"abstract":"<p><strong>Objective: </strong>To examine demographic and geographic diversity in axial spondyloarthritis (axSpA) drug trials.</p><p><strong>Methods: </strong>We performed a descriptive epidemiological study using ClinicalTrials.gov data. We included completed phase II-IV drug trials in adults with axSpA, conducted between 2000 and 2023, with results posted on ClinicalTrials.gov. We extracted and analyzed data on sex, race, ethnicity, trial characteristics, and trial locations.</p><p><strong>Results: </strong>Fifty-nine trials with 16,162 participants were analyzed. Female individuals constituted 30% of participants overall: 25% in radiographic axSpA (r-axSpA) trials, 34% in axSpA trials, and 48% in nonradiographic axSpA (nr-axSpA) trials. Thirty-one trials (53%) reported race, and 12 (20%) reported both race and ethnicity. Race reporting increased from 9% of trials (2000-2010) to 53% (2011-2015) and 100% (2016-2020). Among 10,037 participants with race data, 82% were White, 15% Asian, 2% American Indian/Alaska Native, 1% Black, and 0.02% Native Hawaiian/Pacific Islander. Asian representation increased from 4% (2011-2015) to 19% (2016-2020) and American Indian/Alaska Native from 1% to 3%, whereas Black representation remained consistently low at 1%. Among 3577 patients with ethnicity data, 14% of participants were Hispanic/Latino, increasing from 1% (2011-2015) to 14% (2016-2020). Fifty-one trials with location data enrolled participants from 53 countries. Sub-Saharan Africa (0%) and South/Central Asia (2%) had the lowest geographic representation of enrollment sites.</p><p><strong>Conclusion: </strong>The proportion of women enrolled in axSpA drug trials largely reflects disease demographics. Race and ethnicity reporting has improved over time. Whereas participation of Asian, American Indian/Alaska Native and Hispanic/Latino patients has increased, Black and Native Hawaiian/Pacific Islander representation has remained low. Future efforts should prioritize inclusivity and participation in underrepresented regions globally.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"1245-1253"},"PeriodicalIF":3.4,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12353359/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634765","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-11-15DOI: 10.3899/jrheum.2025-0384
Imane Bardan, Till Uhlig, Joe Sexton, Tore Kristian Kvien, Gunnstein Bakland, Pawel Mielnik, Yi Hu, Øyvind Molberg, Anna-Birgitte Aga, Eirik Klami Kristianslund
Objective: To explore health-related quality of life (HRQOL) measured by the 36-item Short Form Health Survey (SF-36), SF-36 physical component summary (PCS), SF-36 mental component summary (MCS), and Short Form 6D (SF-6D) in adults with juvenile idiopathic arthritis (JIA) compared to patients with rheumatoid arthritis (RA) and the general population.
Methods: We used 6-month follow-up data from the Norwegian Disease-Modifying Antirheumatic Drug Register (NOR-DMARD), including adult patients with JIA and RA starting or switching disease-modifying antirheumatic drug (DMARD) treatment. Age- and gender-adjusted regression analyses were used to compare outcomes among JIA, RA, and the general Norwegian population.
Results: Register data were available for 232 patients with JIA and 2764 with RA at 6 months follow-up. Patients with JIA had poorer physical health compared to those with RA (adjusted difference [95% CI]: PCS -3.58 [-6.09 to -1.08]). Compared to the general population, PCS scores were lower in both JIA and RA (adjusted differences [95% CI]: JIA-general population -15.70 [-18.21 to -13.19], RA-general population -12.12 [-12.76 to -11.47]). Mental health measured by MCS was similar across the 3 groups. Average SF-6D utility levels were comparable in JIA and RA, but lower than in the general population. Similar proportions of patients with JIA and RA experienced improvements exceeding minimum clinically important difference (MCID) in SF-36 scale scores, PCS, MCS, and SF-6D after 6 months.
Conclusion: Compared to patients with RA and the general population, patients with JIA had lower physical HRQOL 6 months after DMARD initiation. Mental health composite scores were similar among patients with JIA, those with RA, and the general population. Both disease groups showed similar levels of improvement with treatment.
{"title":"Health-Related Quality of Life in Disease-Modifying Antirheumatic Drug-Treated Adults With Juvenile Idiopathic Arthritis Compared to Rheumatoid Arthritis and the General Population.","authors":"Imane Bardan, Till Uhlig, Joe Sexton, Tore Kristian Kvien, Gunnstein Bakland, Pawel Mielnik, Yi Hu, Øyvind Molberg, Anna-Birgitte Aga, Eirik Klami Kristianslund","doi":"10.3899/jrheum.2025-0384","DOIUrl":"10.3899/jrheum.2025-0384","url":null,"abstract":"<p><strong>Objective: </strong>To explore health-related quality of life (HRQOL) measured by the 36-item Short Form Health Survey (SF-36), SF-36 physical component summary (PCS), SF-36 mental component summary (MCS), and Short Form 6D (SF-6D) in adults with juvenile idiopathic arthritis (JIA) compared to patients with rheumatoid arthritis (RA) and the general population.</p><p><strong>Methods: </strong>We used 6-month follow-up data from the Norwegian Disease-Modifying Antirheumatic Drug Register (NOR-DMARD), including adult patients with JIA and RA starting or switching disease-modifying antirheumatic drug (DMARD) treatment. Age- and gender-adjusted regression analyses were used to compare outcomes among JIA, RA, and the general Norwegian population.</p><p><strong>Results: </strong>Register data were available for 232 patients with JIA and 2764 with RA at 6 months follow-up. Patients with JIA had poorer physical health compared to those with RA (adjusted difference [95% CI]: PCS -3.58 [-6.09 to -1.08]). Compared to the general population, PCS scores were lower in both JIA and RA (adjusted differences [95% CI]: JIA-general population -15.70 [-18.21 to -13.19], RA-general population -12.12 [-12.76 to -11.47]). Mental health measured by MCS was similar across the 3 groups. Average SF-6D utility levels were comparable in JIA and RA, but lower than in the general population. Similar proportions of patients with JIA and RA experienced improvements exceeding minimum clinically important difference (MCID) in SF-36 scale scores, PCS, MCS, and SF-6D after 6 months.</p><p><strong>Conclusion: </strong>Compared to patients with RA and the general population, patients with JIA had lower physical HRQOL 6 months after DMARD initiation. Mental health composite scores were similar among patients with JIA, those with RA, and the general population. Both disease groups showed similar levels of improvement with treatment.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144976945","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}