Objective: The growing use of social networking services (SNS) has affected how patients with systemic lupus erythematosus (SLE) access health information, potentially influencing their interaction with healthcare providers. This study aimed to examine patients' preferences, actual use, and trust in various health information sources, along with the factors influencing the trust among patients with SLE.
Methods: A multicenter, cross-sectional survey was conducted from June 2020 to August 2021, involving 510 Japanese adults with SLE. Participants reported their preferred and actual sources of health information, including SNS, and their level of trust in these sources. Modified Poisson regression was used to analyze factors influencing trust, including internet usage and health literacy (HL; functional, communicative, and critical).
Results: Most respondents (98.2%) expressed trust in doctors, whereas trust in websites and blogs (52%) and SNS (26.8%) was lower. Despite this, the internet was the most frequent initial source of health information (45.3%), encompassing medical institution websites, patient blogs, X (formerly known as Twitter), and Instagram. Longer internet usage periods were associated with a greater trust in websites and blogs and SNS. Higher functional HL was correlated with an increased trust in doctors but decreased trust in homepages/blogs and SNSs. Higher communicative HL was linked to a greater trust in doctors, websites, and blogs.
Conclusion: Although many patients with SLE initially seek health information online, they prefer to consult rheumatologists. Internet usage duration and multidimensional HL influence trust in online sources. Healthcare providers should consider these factors when disseminating health information and engaging with patients.
{"title":"Trust in Health Information Sources Among Patients With Systemic Lupus Erythematosus in the Social Networking Era: The TRUMP2-SLE Study.","authors":"Takanori Ichikawa, Dai Kishida, Yasuhiro Shimojima, Nobuyuki Yajima, Nao Oguro, Ryusuke Yoshimi, Natsuki Sakurai, Chiharu Hidekawa, Ken-Ei Sada, Yoshia Miyawaki, Keigo Hayashi, Kenta Shidahara, Yuichi Ishikawa, Yoshiki Sekijima, Noriaki Kurita","doi":"10.3899/jrheum.2024-1088","DOIUrl":"10.3899/jrheum.2024-1088","url":null,"abstract":"<p><strong>Objective: </strong>The growing use of social networking services (SNS) has affected how patients with systemic lupus erythematosus (SLE) access health information, potentially influencing their interaction with healthcare providers. This study aimed to examine patients' preferences, actual use, and trust in various health information sources, along with the factors influencing the trust among patients with SLE.</p><p><strong>Methods: </strong>A multicenter, cross-sectional survey was conducted from June 2020 to August 2021, involving 510 Japanese adults with SLE. Participants reported their preferred and actual sources of health information, including SNS, and their level of trust in these sources. Modified Poisson regression was used to analyze factors influencing trust, including internet usage and health literacy (HL; functional, communicative, and critical).</p><p><strong>Results: </strong>Most respondents (98.2%) expressed trust in doctors, whereas trust in websites and blogs (52%) and SNS (26.8%) was lower. Despite this, the internet was the most frequent initial source of health information (45.3%), encompassing medical institution websites, patient blogs, X (formerly known as Twitter), and Instagram. Longer internet usage periods were associated with a greater trust in websites and blogs and SNS. Higher functional HL was correlated with an increased trust in doctors but decreased trust in homepages/blogs and SNSs. Higher communicative HL was linked to a greater trust in doctors, websites, and blogs.</p><p><strong>Conclusion: </strong>Although many patients with SLE initially seek health information online, they prefer to consult rheumatologists. Internet usage duration and multidimensional HL influence trust in online sources. Healthcare providers should consider these factors when disseminating health information and engaging with patients.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"1005-1012"},"PeriodicalIF":3.4,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143634794","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 : 2025-10-01DOI: 10.3899/jrheum.2024-1279
Young-Eun Kim, Soo Min Ahn, Ji Seon Oh, Yong-Gil Kim, Chang-Keun Lee, Bin Yoo, Sung Wook Hwang, Byong Duk Ye, Suk-Kyun Yang, Sang Hyoung Park, Seokchan Hong
Objective: To detect spondyloarthritis (SpA) and evaluate risk factors in patients with inflammatory bowel disease (IBD) during biologic or Janus kinase inhibitor (JAKi) treatment.
Methods: This was a retrospective cohort study of patients with IBD receiving biologics or JAKi, excluding prior SpA cases. We identified patients who developed musculoskeletal (MSK) symptoms during IBD treatment. SpA was diagnosed after a clinical evaluation by a rheumatologist alongside imaging analysis of conventional radiographs and HLA-B27 determination. Magnetic resonance imaging of the sacroiliac joints was performed only in cases where the conventional radiograph was inconclusive.
Results: Of 1649 patients with IBD receiving biologic or JAKi treatment (Crohn disease: 1335; ulcerative colitis [UC]: 314), 96 (5.8%) were excluded due to a prior SpA diagnosis. Among the remaining 1553 patients, 106 (6.8%) developed MSK symptoms during IBD treatment, and 30 (1.9%) were diagnosed with SpA (axial: 20; peripheral: 10) during the follow-up (median 5.2 [IQR 3.4-7.5] years). Risk factors for SpA in these patients included a partial Mayo score for UC at the time of onset of MSK symptoms (hazard ratio [HR] 1.57; P = 0.03) and HLA-B27 positivity (HR 3.70; P = 0.004). As well as IBD treatment, 23/30 (77%) patients with SpA used nonsteroidal antiinflammatory drugs (NSAIDs). IBD disease activity did not worsen during treatment, regardless of NSAID use.
Conclusion: During a median follow-up of 5.2 years, 6.8% of patients with IBD undergoing biologic or JAKi treatment developed MSK symptoms, with one-third subsequently diagnosed with SpA. HLA-B27 positivity and higher UC disease activity were associated with an increased risk of SpA.
{"title":"Risk of Spondyloarthritis in Patients With Inflammatory Bowel Disease Receiving Treatment With Biologics or Janus Kinase Inhibitors.","authors":"Young-Eun Kim, Soo Min Ahn, Ji Seon Oh, Yong-Gil Kim, Chang-Keun Lee, Bin Yoo, Sung Wook Hwang, Byong Duk Ye, Suk-Kyun Yang, Sang Hyoung Park, Seokchan Hong","doi":"10.3899/jrheum.2024-1279","DOIUrl":"10.3899/jrheum.2024-1279","url":null,"abstract":"<p><strong>Objective: </strong>To detect spondyloarthritis (SpA) and evaluate risk factors in patients with inflammatory bowel disease (IBD) during biologic or Janus kinase inhibitor (JAKi) treatment.</p><p><strong>Methods: </strong>This was a retrospective cohort study of patients with IBD receiving biologics or JAKi, excluding prior SpA cases. We identified patients who developed musculoskeletal (MSK) symptoms during IBD treatment. SpA was diagnosed after a clinical evaluation by a rheumatologist alongside imaging analysis of conventional radiographs and HLA-B27 determination. Magnetic resonance imaging of the sacroiliac joints was performed only in cases where the conventional radiograph was inconclusive.</p><p><strong>Results: </strong>Of 1649 patients with IBD receiving biologic or JAKi treatment (Crohn disease: 1335; ulcerative colitis [UC]: 314), 96 (5.8%) were excluded due to a prior SpA diagnosis. Among the remaining 1553 patients, 106 (6.8%) developed MSK symptoms during IBD treatment, and 30 (1.9%) were diagnosed with SpA (axial: 20; peripheral: 10) during the follow-up (median 5.2 [IQR 3.4-7.5] years). Risk factors for SpA in these patients included a partial Mayo score for UC at the time of onset of MSK symptoms (hazard ratio [HR] 1.57; <i>P</i> = 0.03) and HLA-B27 positivity (HR 3.70; <i>P</i> = 0.004). As well as IBD treatment, 23/30 (77%) patients with SpA used nonsteroidal antiinflammatory drugs (NSAIDs). IBD disease activity did not worsen during treatment, regardless of NSAID use.</p><p><strong>Conclusion: </strong>During a median follow-up of 5.2 years, 6.8% of patients with IBD undergoing biologic or JAKi treatment developed MSK symptoms, with one-third subsequently diagnosed with SpA. HLA-B27 positivity and higher UC disease activity were associated with an increased risk of SpA.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144719007","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 : 2025-10-01DOI: 10.3899/jrheum.2024-0298.C1
Hermine I Brunner, César Pacheco-Tena, Ingrid Louw, Gabriel Vega-Cornejo, Ekaterina Alexeeva, Simone Appenzeller, Vyacheslav Chasnyk, Thomas Griffin, Carmen Navarrete Suarez, Sheila Knupp-Oliveira, Andrew Zeft, Yonatan Butbul Aviel, Deirdre De Ranieri, Beth S Gottlieb, Deborah M Levy, C Egla Rabinovich, Clóvis Artur Silva, Yury Spivakovsky, Yosef Uziel, Sarah Ringold, Xie L Xu, Jocelyn H Leu, Edwin Lam, Yuhua Wang, Daniel J Lovell, Alberto Martini, Nicolino Ruperto
{"title":"Intravenous Golimumab in Children With Polyarticular-Course Juvenile Idiopathic Arthritis: Long-Term Extension of an Open-Label Phase III Study.","authors":"Hermine I Brunner, César Pacheco-Tena, Ingrid Louw, Gabriel Vega-Cornejo, Ekaterina Alexeeva, Simone Appenzeller, Vyacheslav Chasnyk, Thomas Griffin, Carmen Navarrete Suarez, Sheila Knupp-Oliveira, Andrew Zeft, Yonatan Butbul Aviel, Deirdre De Ranieri, Beth S Gottlieb, Deborah M Levy, C Egla Rabinovich, Clóvis Artur Silva, Yury Spivakovsky, Yosef Uziel, Sarah Ringold, Xie L Xu, Jocelyn H Leu, Edwin Lam, Yuhua Wang, Daniel J Lovell, Alberto Martini, Nicolino Ruperto","doi":"10.3899/jrheum.2024-0298.C1","DOIUrl":"10.3899/jrheum.2024-0298.C1","url":null,"abstract":"","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"1069"},"PeriodicalIF":3.4,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144790589","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 : 2025-10-01DOI: 10.3899/jrheum.2025-0190
Rebecca T Brooks, Cassondra A Hulshizer, Andrew C Hanson, John M Davis, Vanessa L Kronzer, Elena Myasoedova, Cynthia S Crowson
Objective: To determine the incidence of breast, cervical, prostate, and colorectal cancer screening in patients with rheumatoid arthritis (RA) vs matched non-RA comparators.
Methods: We performed a retrospective, matched cohort study of patients with and without RA living in an 8-county region of southern Minnesota on January 1, 2015. Through review of medical records, patients who fulfilled either the 1987 American College of Rheumatology (ACR) or 2010 ACR/European Alliance of Associations for Rheumatology classification criteria for RA were identified. Patients with RA were matched 1:1 to non-RA comparators on age, sex, and county of residence. Cancer screening was determined from review of the US Preventative Task Force recommendations. Cumulative incidence of cancer screening was estimated accounting for the competing risk of death, and Cox proportional hazard models adjusted for age, smoking, and race assessed for the risk of delay.
Results: The study included 1614 patients with RA and 1597 comparators without RA (mean age 63 years, 71% female). At 5-years of follow-up, 51.6% (95% CI 47.9-55.6) of the RA cohort had cervical cancer screening compared to 58.2% (95% CI 54.5-62.2) in the non-RA cohort. After adjusting for age, smoking, and race, RA was associated with decreased cervical cancer screening (adjusted hazard ratio [aHR] 0.83, 95% CI 0.72-0.96). RA was not significantly associated with a decrease in breast (aHR 0.98, 95% CI 0.87-1.10), prostate (aHR 0.99, 95% CI 0.74-1.34), or colorectal (aHR 1.04, 95% CI 0.93-1.16) cancer screening.
Conclusion: Women with RA were more likely to experience delayed cervical cancer screening. Increased diligence by healthcare providers to ensure cervical cancer screening in patients with RA is important to reduce the morbidity and mortality seen in these patients.
{"title":"Cumulative Incidence of Cancer Screening for Breast, Cervical, Prostate, and Colorectal Cancer in Patients With Rheumatoid Arthritis.","authors":"Rebecca T Brooks, Cassondra A Hulshizer, Andrew C Hanson, John M Davis, Vanessa L Kronzer, Elena Myasoedova, Cynthia S Crowson","doi":"10.3899/jrheum.2025-0190","DOIUrl":"10.3899/jrheum.2025-0190","url":null,"abstract":"<p><strong>Objective: </strong>To determine the incidence of breast, cervical, prostate, and colorectal cancer screening in patients with rheumatoid arthritis (RA) vs matched non-RA comparators.</p><p><strong>Methods: </strong>We performed a retrospective, matched cohort study of patients with and without RA living in an 8-county region of southern Minnesota on January 1, 2015. Through review of medical records, patients who fulfilled either the 1987 American College of Rheumatology (ACR) or 2010 ACR/European Alliance of Associations for Rheumatology classification criteria for RA were identified. Patients with RA were matched 1:1 to non-RA comparators on age, sex, and county of residence. Cancer screening was determined from review of the US Preventative Task Force recommendations. Cumulative incidence of cancer screening was estimated accounting for the competing risk of death, and Cox proportional hazard models adjusted for age, smoking, and race assessed for the risk of delay.</p><p><strong>Results: </strong>The study included 1614 patients with RA and 1597 comparators without RA (mean age 63 years, 71% female). At 5-years of follow-up, 51.6% (95% CI 47.9-55.6) of the RA cohort had cervical cancer screening compared to 58.2% (95% CI 54.5-62.2) in the non-RA cohort. After adjusting for age, smoking, and race, RA was associated with decreased cervical cancer screening (adjusted hazard ratio [aHR] 0.83, 95% CI 0.72-0.96). RA was not significantly associated with a decrease in breast (aHR 0.98, 95% CI 0.87-1.10), prostate (aHR 0.99, 95% CI 0.74-1.34), or colorectal (aHR 1.04, 95% CI 0.93-1.16) cancer screening.</p><p><strong>Conclusion: </strong>Women with RA were more likely to experience delayed cervical cancer screening. Increased diligence by healthcare providers to ensure cervical cancer screening in patients with RA is important to reduce the morbidity and mortality seen in these patients.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"988-996"},"PeriodicalIF":3.4,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12313206/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144719005","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 : 2025-10-01DOI: 10.3899/jrheum.2025-0167
Gregory C McDermott, Mathieu Choufani, Armaan Monshizadeh, Joerg Ermann
Objective: The HLA-B27 allele is strongly associated with spondyloarthritis (SpA). HLA-B27 is included in SpA classification criteria and referral strategies for axial SpA. Investigations of HLA-B27 testing in usual clinical practice are limited.
Methods: We identified all adult patients tested for HLA-B27 from January 1, 2022, to December 31, 2022, in the Mass General Brigham healthcare system. We examined patient demographics; ordering provider specialty; testing indication; concurrent testing with antinuclear antibodies (ANA), rheumatoid factor, and/or anticyclic citrullinated peptide autoantibodies; and rheumatology referral. We compared the rate of rheumatology referral between HLA-B27-positive and HLA-B27-negative patients.
Results: HLA-B27 tests were ordered for 1960 patients (62.4% female; average age: 47.4 yrs). The most common specialties testing HLA-B27 were rheumatology (39.7%) and ophthalmology (21.4%). The most common indications for HLA-B27 testing were peripheral arthritis (33%), uveitis (22%), and back pain (16.7%). The majority of HLA-B27 tests (69.3%) were ordered concurrently with other autoantibody tests. A total of 11% of tested patients were HLA-B27 positive. Ophthalmology had the highest positive rate (15.4%), whereas reactive arthritis was the indication with the highest positive test rate (50%). A greater proportion of HLA-B27-positive patients were referred to rheumatology (53% vs 32%; P = 0.002).
Conclusion: HLA-B27 testing was frequently performed by rheumatologists and nonrheumatologists for a broad spectrum of indications. Cotesting HLA-B27 with ANA and rheumatoid arthritis autoantibodies was common. Nearly half of HLA-B27-positive patients were not referred to rheumatology. Further efforts are needed to promote judicious use of HLA-B27 testing and optimize referral pathways to rheumatology.
目的:人白细胞抗原B27 (HLA-B27)等位基因与脊柱炎(SpA)密切相关。HLA-B27被纳入SpA的分类标准和轴向SpA的转诊策略。在常规临床实践中对HLA-B27检测的调查是有限的。方法:我们确定了2022年1月1日至2022年12月31日在麻省总医院布里格姆医疗保健系统中检测HLA-B27的所有成年患者。我们检查了患者的人口统计学特征、医生专业、检测适应症、同时检测抗核抗体、类风湿因子或抗环瓜氨酸肽自身抗体,以及风湿病转诊。我们比较了HLA-B27阳性和阴性患者的风湿病转诊率。结果:对1960例患者进行了HLA-B27检测(62.4%为女性,平均年龄47.4岁)。检测HLA-B27最常见的专科是风湿病科(39.7%)和眼科(21.4%)。HLA-B27检测最常见的适应症是外周关节炎(33.0%)、葡萄膜炎(22.0%)和背痛(16.7%)。大多数HLA-B27检测(69.3%)与其他自身抗体检测同时进行。HLA-B27检测阳性率为10.9%。阳性检出率最高的是眼科(15.4%),阳性检出率最高的是反应性关节炎(50%)。HLA-B27阳性患者转诊风湿病的比例更高(53% vs 32%, p=0.002)。结论:HLA-B27检测经常被风湿病学家和非风湿病学家用于广泛的适应症。HLA-B27与ANA和类风湿关节炎自身抗体共同检测是常见的。将近一半的HLA-B27阳性患者没有转诊到风湿病科。需要进一步努力促进HLA-B27检测的明智使用,并优化风湿病转诊途径。
{"title":"HLA-B27 Testing in Clinical Practice: A Retrospective Analysis of Testing Indications and Rheumatology Referral Patterns.","authors":"Gregory C McDermott, Mathieu Choufani, Armaan Monshizadeh, Joerg Ermann","doi":"10.3899/jrheum.2025-0167","DOIUrl":"10.3899/jrheum.2025-0167","url":null,"abstract":"<p><strong>Objective: </strong>The HLA-B27 allele is strongly associated with spondyloarthritis (SpA). HLA-B27 is included in SpA classification criteria and referral strategies for axial SpA. Investigations of HLA-B27 testing in usual clinical practice are limited.</p><p><strong>Methods: </strong>We identified all adult patients tested for HLA-B27 from January 1, 2022, to December 31, 2022, in the Mass General Brigham healthcare system. We examined patient demographics; ordering provider specialty; testing indication; concurrent testing with antinuclear antibodies (ANA), rheumatoid factor, and/or anticyclic citrullinated peptide autoantibodies; and rheumatology referral. We compared the rate of rheumatology referral between HLA-B27-positive and HLA-B27-negative patients.</p><p><strong>Results: </strong>HLA-B27 tests were ordered for 1960 patients (62.4% female; average age: 47.4 yrs). The most common specialties testing HLA-B27 were rheumatology (39.7%) and ophthalmology (21.4%). The most common indications for HLA-B27 testing were peripheral arthritis (33%), uveitis (22%), and back pain (16.7%). The majority of HLA-B27 tests (69.3%) were ordered concurrently with other autoantibody tests. A total of 11% of tested patients were HLA-B27 positive. Ophthalmology had the highest positive rate (15.4%), whereas reactive arthritis was the indication with the highest positive test rate (50%). A greater proportion of HLA-B27-positive patients were referred to rheumatology (53% vs 32%; <i>P</i> = 0.002).</p><p><strong>Conclusion: </strong>HLA-B27 testing was frequently performed by rheumatologists and nonrheumatologists for a broad spectrum of indications. Cotesting HLA-B27 with ANA and rheumatoid arthritis autoantibodies was common. Nearly half of HLA-B27-positive patients were not referred to rheumatology. Further efforts are needed to promote judicious use of HLA-B27 testing and optimize referral pathways to rheumatology.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"1021-1027"},"PeriodicalIF":3.4,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12353883/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144200708","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 : 2025-09-01DOI: 10.3899/jrheum.2025-0375
Isabella Zaffino, Louise Boulard, Joanna Law, Ashley Danguecan, Asha Jeyanathan, Lawrence Ng, Sandra Williams-Reid, Kiah Reid, Angela Cortes, Eugene Cortes, Deborah M Levy, Linda T Hiraki, Andrea M Knight
Objective: This study investigates individual and socio-ecological resilience and their relationship with sociodemographic and disease characteristics, and psychosocial patient-reported outcomes in childhood-onset systemic lupus erythematosus (cSLE).
Methods: We conducted a cross-sectional study of patients with cSLE ages 11-22 years at a Canadian tertiary center from October 2021-July 2024. The Connor-Davidson Resilience Scale (CD-RISC 10) assessed individual resilience. The Child and Youth Resilience Measure-Revised (CYRM-R) assessed socio-ecological resilience. Linear regression models examined associations between resilience with socio-demographic (e.g., health literacy, adverse childhood experiences (ACEs)) and disease factors (e.g., age of onset, duration, disease activity). Pearson correlations determined relationships between resilience and patient-reported depressive and anxiety symptoms, executive functioning, pain interference and fatigue.
Results: Of 49 participants, mean scores for individual psychological resilience were CD-RISC 10 of 26.0 (SD=7.1) and socio-ecological resilience were CYRM-R of 73.4 (SD=9.1). Higher resilience on CD-RISC 10 (b=0.99, 95%CI [0.45 to 1.55], p<0.01) and CYRM-R (b=0.84, 95%CI [0.13 to 1.55], p=0.02) was associated with better health literacy on the communication subscale. Lower CYRM-R scores were associated with higher number of ACEs (b=-1.02, 95% CI [-1.88 to -0.17], p=0.02). For patient-reported outcomes, lower scores for both individual and socio-ecological resilience correlated with worse depressive symptoms (r=-0.44, p=0.003 for CD-RISC 10; r=-0.55, p=0.001 for CYRM-R) and executive functioning (r=-0.49, p=0.002 for CD-RISC 10; r=-0.56, p=0.002 for CYRM-R).
Conclusion: Greater resilience was associated with fewer ACEs, and better health-related communication, patient-reported mental health and executive functioning. Findings highlight the importance of fostering resilience to improve outcomes in youth with cSLE.
{"title":"Individual and Socio-ecological Resilience in Childhood-Onset Systemic Lupus Erythematosus: Associations with Patient Characteristics and Psychosocial Patient-Reported Outcomes.","authors":"Isabella Zaffino, Louise Boulard, Joanna Law, Ashley Danguecan, Asha Jeyanathan, Lawrence Ng, Sandra Williams-Reid, Kiah Reid, Angela Cortes, Eugene Cortes, Deborah M Levy, Linda T Hiraki, Andrea M Knight","doi":"10.3899/jrheum.2025-0375","DOIUrl":"https://doi.org/10.3899/jrheum.2025-0375","url":null,"abstract":"<p><strong>Objective: </strong>This study investigates individual and socio-ecological resilience and their relationship with sociodemographic and disease characteristics, and psychosocial patient-reported outcomes in childhood-onset systemic lupus erythematosus (cSLE).</p><p><strong>Methods: </strong>We conducted a cross-sectional study of patients with cSLE ages 11-22 years at a Canadian tertiary center from October 2021-July 2024. The Connor-Davidson Resilience Scale (CD-RISC 10) assessed individual resilience. The Child and Youth Resilience Measure-Revised (CYRM-R) assessed socio-ecological resilience. Linear regression models examined associations between resilience with socio-demographic (e.g., health literacy, adverse childhood experiences (ACEs)) and disease factors (e.g., age of onset, duration, disease activity). Pearson correlations determined relationships between resilience and patient-reported depressive and anxiety symptoms, executive functioning, pain interference and fatigue.</p><p><strong>Results: </strong>Of 49 participants, mean scores for individual psychological resilience were CD-RISC 10 of 26.0 (SD=7.1) and socio-ecological resilience were CYRM-R of 73.4 (SD=9.1). Higher resilience on CD-RISC 10 (b=0.99, 95%CI [0.45 to 1.55], p<0.01) and CYRM-R (b=0.84, 95%CI [0.13 to 1.55], p=0.02) was associated with better health literacy on the communication subscale. Lower CYRM-R scores were associated with higher number of ACEs (b=-1.02, 95% CI [-1.88 to -0.17], p=0.02). For patient-reported outcomes, lower scores for both individual and socio-ecological resilience correlated with worse depressive symptoms (r=-0.44, p=0.003 for CD-RISC 10; r=-0.55, p=0.001 for CYRM-R) and executive functioning (r=-0.49, p=0.002 for CD-RISC 10; r=-0.56, p=0.002 for CYRM-R).</p><p><strong>Conclusion: </strong>Greater resilience was associated with fewer ACEs, and better health-related communication, patient-reported mental health and executive functioning. Findings highlight the importance of fostering resilience to improve outcomes in youth with cSLE.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144977024","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 : 2025-09-01DOI: 10.3899/jrheum.2024-1034
Maria B Sukkar, Rosemary Ainley, Claire Barrett, Stephanie Bond, Linda A Bradbury, Andrew M Briggs, Angela Brown, Courtney Brown, Rachelle Buchbinder, Lisa Carroll, Jessica Cheers, Rebecca Grainger, Pauline Habib, Louise Hardy, Justin J Holland, Tony Hollins, Rebecca James, Donna Knapp, David F L Liew, Lyn March, David Martens, Carol McCrum, Dennis R Neuen, Jonathan Ong, Susanna M Proudman, Debra Rowett, Tracey Rudd, Sabina Schot, Marline L Squance, Deborah E Turner, Samuel L Whittle, Shirani A Wright, Helen Keen, Catherine L Hill
Objective: To develop a quality standard, termed a Clinical Care Standard (CCS), for the diagnosis and management of rheumatoid arthritis (RA).
Methods: A Working Group with consumer representation cocreated guiding principles and quality statements for RA care through a series of workshops. The process was informed by consumer recommendations, clinical practice guidelines, and international quality criteria. A national survey of healthcare professionals (HCPs) and consumers was conducted to establish consensus. For each quality statement, respondents were asked to indicate, on a scale of 1-9, (1) if it is a priority area for improvement in RA care, and (2) their agreement with the content of the statement. For (1) and (2), respectively, scores between 1 and 4 indicated it was not a priority and disagreement; 5 and 6 indicated it was important but not critical and moderate agreement; and 7 to 9 indicated it was high priority and agreement. Criteria for inclusion were a mean score ≥ 7 for priority and a mean score ≥ 7 for content.
Results: The Working Group formulated 13 quality statements and established 7 guiding principles for RA care. The survey was completed by 605 consumers and 308 HCPs. The predefined criteria for inclusion were met by 12/13 quality statements.
Conclusion: The Australian Rheumatology Association has developed the first CCS for RA in Australia. This standard will serve as an important lever for HCPs and services, consumer organizations, and policy makers to improve the quality of care for adults with RA.
{"title":"Development of the Australian Rheumatology Association Clinical Care Standard for the Diagnosis and Management of Rheumatoid Arthritis in Adults.","authors":"Maria B Sukkar, Rosemary Ainley, Claire Barrett, Stephanie Bond, Linda A Bradbury, Andrew M Briggs, Angela Brown, Courtney Brown, Rachelle Buchbinder, Lisa Carroll, Jessica Cheers, Rebecca Grainger, Pauline Habib, Louise Hardy, Justin J Holland, Tony Hollins, Rebecca James, Donna Knapp, David F L Liew, Lyn March, David Martens, Carol McCrum, Dennis R Neuen, Jonathan Ong, Susanna M Proudman, Debra Rowett, Tracey Rudd, Sabina Schot, Marline L Squance, Deborah E Turner, Samuel L Whittle, Shirani A Wright, Helen Keen, Catherine L Hill","doi":"10.3899/jrheum.2024-1034","DOIUrl":"10.3899/jrheum.2024-1034","url":null,"abstract":"<p><strong>Objective: </strong>To develop a quality standard, termed a Clinical Care Standard (CCS), for the diagnosis and management of rheumatoid arthritis (RA).</p><p><strong>Methods: </strong>A Working Group with consumer representation cocreated guiding principles and quality statements for RA care through a series of workshops. The process was informed by consumer recommendations, clinical practice guidelines, and international quality criteria. A national survey of healthcare professionals (HCPs) and consumers was conducted to establish consensus. For each quality statement, respondents were asked to indicate, on a scale of 1-9, (1) if it is a priority area for improvement in RA care, and (2) their agreement with the content of the statement. For (1) and (2), respectively, scores between 1 and 4 indicated it was not a priority and disagreement; 5 and 6 indicated it was important but not critical and moderate agreement; and 7 to 9 indicated it was high priority and agreement. Criteria for inclusion were a mean score ≥ 7 for priority and a mean score ≥ 7 for content.</p><p><strong>Results: </strong>The Working Group formulated 13 quality statements and established 7 guiding principles for RA care. The survey was completed by 605 consumers and 308 HCPs. The predefined criteria for inclusion were met by 12/13 quality statements.</p><p><strong>Conclusion: </strong>The Australian Rheumatology Association has developed the first CCS for RA in Australia. This standard will serve as an important lever for HCPs and services, consumer organizations, and policy makers to improve the quality of care for adults with RA.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"883-892"},"PeriodicalIF":3.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144200707","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 : 2025-09-01DOI: 10.3899/jrheum.2024-1321
Karin Furukawa, Kaichi Kaneko, Mai Kawazoe, Kotaro Shikano, Takahiko Sugihara, Toshihiro Nanki
Objective: The long-term effectiveness of denosumab, an antireceptor activator of nuclear factor-κB ligand monoclonal antibody, for increasing bone mineral density (BMD) and reducing fracture risk in postmenopausal women with osteoporosis (OP) has been demonstrated; however, the long-term effectiveness and safety in patients with rheumatic diseases (RDs) remain unclear. Therefore, the present study investigated the long-term effectiveness and safety of denosumab for OP in patients with RDs.
Methods: This retrospective study included patients who received denosumab between August 2013 and August 2022. We evaluated BMD at the lumbar spine for up to 7 years and at the femur for up to 3 years. The effects of glucocorticoid (GC) usage, age, and renal function on BMD in patients receiving denosumab were assessed. The retention rate and adverse events were also evaluated.
Results: One hundred sixty-five patients with RDs were enrolled (median age 66.5 years, 92.1% female, 68.5% receiving GC therapy). Lumbar spine BMD significantly increased over 7 years (P < 0.001), whereas femoral neck, trochanter, and total hip BMD significantly increased for up to 3 years (P < 0.001). Lumbar spine BMD significantly increased regardless of GC dose, age, or renal dysfunction. The retention rate of denosumab at 7 years was 68.1%. The most common serious adverse event was infection. Two cases of osteonecrosis of the jaw and 10 new fractures were observed during treatment with denosumab.
Conclusion: The present study suggests that the long-term use of denosumab is an effective and generally safe option for increasing BMD in patients with RDs.
{"title":"Long-Term Effectiveness and Safety of Denosumab for Osteoporosis in Patients With Rheumatic Diseases.","authors":"Karin Furukawa, Kaichi Kaneko, Mai Kawazoe, Kotaro Shikano, Takahiko Sugihara, Toshihiro Nanki","doi":"10.3899/jrheum.2024-1321","DOIUrl":"10.3899/jrheum.2024-1321","url":null,"abstract":"<p><strong>Objective: </strong>The long-term effectiveness of denosumab, an antireceptor activator of nuclear factor-κB ligand monoclonal antibody, for increasing bone mineral density (BMD) and reducing fracture risk in postmenopausal women with osteoporosis (OP) has been demonstrated; however, the long-term effectiveness and safety in patients with rheumatic diseases (RDs) remain unclear. Therefore, the present study investigated the long-term effectiveness and safety of denosumab for OP in patients with RDs.</p><p><strong>Methods: </strong>This retrospective study included patients who received denosumab between August 2013 and August 2022. We evaluated BMD at the lumbar spine for up to 7 years and at the femur for up to 3 years. The effects of glucocorticoid (GC) usage, age, and renal function on BMD in patients receiving denosumab were assessed. The retention rate and adverse events were also evaluated.</p><p><strong>Results: </strong>One hundred sixty-five patients with RDs were enrolled (median age 66.5 years, 92.1% female, 68.5% receiving GC therapy). Lumbar spine BMD significantly increased over 7 years (<i>P</i> < 0.001), whereas femoral neck, trochanter, and total hip BMD significantly increased for up to 3 years (<i>P</i> < 0.001). Lumbar spine BMD significantly increased regardless of GC dose, age, or renal dysfunction. The retention rate of denosumab at 7 years was 68.1%. The most common serious adverse event was infection. Two cases of osteonecrosis of the jaw and 10 new fractures were observed during treatment with denosumab.</p><p><strong>Conclusion: </strong>The present study suggests that the long-term use of denosumab is an effective and generally safe option for increasing BMD in patients with RDs.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"927-933"},"PeriodicalIF":3.4,"publicationDate":"2025-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144200710","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}