Journal of Rheumatology最新文献

{"title":"Development of an Application for Self-Monitoring to Empower Patients With Rheumatoid Arthritis (MyRA).","authors":"Cheryl Roumen, Laura M Hochstenbach, Pim van den Dungen, Anouk M Knops, Maria B J Brokken-Peters, Marieke D Spreeuwenberg, Harald E Vonkeman, Astrid van Tubergen","doi":"10.3899/jrheum.2024-1071","DOIUrl":"10.3899/jrheum.2024-1071","url":null,"abstract":"<p><strong>Objective: </strong>To develop a web-based self-monitoring tool including motivational elements to improve empowerment of patients with rheumatoid arthritis (RA).</p><p><strong>Methods: </strong>Following a design-thinking approach, the development included 3 iterative, cocreative phases involving different stakeholders. In the empathize and define phase, 2 focus groups gave insight into patients' wishes and needs regarding self-monitoring with an application. During the ideation phase, 2 cocreation sessions were organized to establish the content of the application and consider motivational elements. For the prototyping and testing phase, usability was assessed through both formative (heuristics evaluation) and summative (system usability scale [SUS] 0-100; ≥ 68 was considered good to excellent) evaluations.</p><p><strong>Results: </strong>The focus group meetings resulted in a shortlist of what to monitor (physical function, quality of life, pain, fatigue, mental well-being, and social participation) and preferences on how to monitor (single-item questions, 0-10 scale, use as needed). The cocreation sessions revealed preference for empathetic dialogues with an avatar for self-monitoring. Setting goals, adding notes, sharing results, and receiving tips could further increase motivation for use. Initial experiences regarding heuristics of the tool were generally positive and confirmed by a mean SUS score of 84.4 (SD 11.6). Points for improvement included simplifying login procedures, adding notifications, and adjusting the avatar's tone of voice.</p><p><strong>Conclusion: </strong>A web-based self-monitoring application (MyRA) was developed, with an avatar that asks patients through dialogues to score 6 domains, with graphical displays, diary functionality, and practical tips. Further studies are needed to confirm its usability and effectiveness in empowering patients.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.6,"publicationDate":"2025-04-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143558523","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}

{"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":""},"PeriodicalIF":3.6,"publicationDate":"2025-04-15","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}

{"title":"More Than Pain and Stiffness: Persistent Fatigue and Sleep Disturbance in Polymyalgia Rheumatica.","authors":"Jessica L Leung, Belinda De Ross, Jenny Gianoudis, Natalie Deeble, Victor Yang, Robert Azzopardi, David F L Liew, Robin M Daly, Russell R C Buchanan, Claire E Owen","doi":"10.3899/jrheum.2024-0980","DOIUrl":"10.3899/jrheum.2024-0980","url":null,"abstract":"<p><strong>Objective: </strong>We aimed to examine fatigue and sleep disturbance in patients with recently diagnosed polymyalgia rheumatica (PMR) compared to age- and gender-matched controls, including associated characteristics and change over an 18-month follow-up period.</p><p><strong>Methods: </strong>Patients meeting the 2012 European Alliance of Associations for Rheumatology/American College of Rheumatology classification criteria for PMR were prospectively recruited, together with matched controls. Assessments were undertaken 3 months after the commencement of glucocorticoids and again 18 months later. Fatigue was quantified using the Bristol Rheumatoid Arthritis Fatigue Multidimensional Questionnaire and the 36-item Short Form Health Survey vitality scale. Sleep was quantified using the Pittsburgh Sleep Quality Index. Other data collected included PMR disease activity, depression, anxiety, and physical function status. All participants underwent body composition by dual-energy x-ray absorptiometry and physical function testing.</p><p><strong>Results: </strong>Thirty-six participants with PMR and 32 controls were included. PMR disease activity was low at both visits. Significantly, more patients with PMR than controls suffered severe fatigue (PMR: 36% and 35% at baseline and follow-up, respectively; controls: 3% at both timepoints). Poor sleep quality also affected more patients with PMR (77% and 84% at baseline and follow-up, respectively) than controls (56% at both timepoints). Higher BMI and fat mass index, anxiety, depression, PMR Activity Score, inflammatory markers, pain, and stiffness were all associated with severe fatigue. There were no significant associations with poor sleep.</p><p><strong>Conclusion: </strong>Patients with PMR experience a disproportionate degree of fatigue and sleep disturbance, which persists almost 2 years after starting treatment. Features associated with fatigue include higher adiposity, psychological comorbidity, and PMR disease activity.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":""},"PeriodicalIF":3.6,"publicationDate":"2025-04-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143765466","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}

{"title":"Unveiling the Dual Benefits of Bosentan in Systemic Sclerosis: Risk and Relief.","authors":"Matthew R Lammi, Monica Mukherjee","doi":"10.3899/jrheum.2025-0049","DOIUrl":"10.3899/jrheum.2025-0049","url":null,"abstract":"","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"305-307"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12026298/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143426446","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}

{"title":"Physician Burnout Among Chinese Rheumatologists Under Newly Introduced Healthcare Payment Systems: A Cross-Sectional Study.","authors":"Fanzhang Meng, Huaijuan Huang, Zhimin Lin, Hongxu Liu, Kai Yuan, Xiujuan Hou, Chen Li","doi":"10.3899/jrheum.2024-0854","DOIUrl":"10.3899/jrheum.2024-0854","url":null,"abstract":"","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"400-402"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143557688","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}

{"title":"We Would Like You to Get on Board.","authors":"Soumya Chatterjee","doi":"10.3899/jrheum.2024-0870","DOIUrl":"10.3899/jrheum.2024-0870","url":null,"abstract":"","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"398-399"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142840068","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}

{"title":"Lived Education Experience of Young Adults With Childhood- and Adult-Onset Systemic Lupus Erythematosus: A Multicenter Canadian Qualitative Study.","authors":"Fareha Nishat, Michael A Golding, Kaitlyn A Merrill, Jennifer L P Protudjer, Roberta L Woodgate, Ramandeep Kaur, Diane Lacaille, Umut Oguzoglu, Zahi Touma, Christine Peschken, Jennifer N Stinson, Lily S H Lim","doi":"10.3899/jrheum.2024-0695","DOIUrl":"10.3899/jrheum.2024-0695","url":null,"abstract":"<p><strong>Objective: </strong>Young adults with systemic lupus erythematosus (SLE) have physical, cognitive, and psychosocial health issues and other comorbidities that may affect educational attainment and, ultimately, lifetime socioeconomic achievement. We aimed to understand the lived educational experiences of young adults with SLE and to assess their perceived barriers from SLE.</p><p><strong>Methods: </strong>Individual semistructured interviews were conducted remotely with participants from 2 SLE clinics in Canada. All interviews were transcribed verbatim, double-coded, and analyzed using a reflexive thematic approach.</p><p><strong>Results: </strong>Thirteen participants (85% female) with a median age of 20.5 years-8 with childhood-onset SLE and 5 with adult-onset SLE-were interviewed. Four themes were identified: (1) challenges due to SLE (difficulties adjusting to the diagnosis, physical and cognitive symptoms of SLE); (2) changes in aspirations (education or career goals modified by reducing course load or shifting to a more sedentary or less demanding career); (3) facilitators of student success (social support from family and friends, parental financial support, individualized accommodations from institutions, and asynchronous learning opportunities as a response to the coronavirus disease 2019 pandemic); and (4) coping and moving forward (using more adaptive than maladaptive coping strategies to self-manage, including self-acceptance, pacing, and planning).</p><p><strong>Conclusion: </strong>Whereas most participants were successfully engaging in higher education, their performance was often negatively affected by the physical and cognitive toll of SLE. Social support and academic accommodations helped to alleviate the challenges experienced by this group. Going forward, clinicians should initiate conversations about the educational experiences of young adults with SLE to proactively address the challenges they may face.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"368-374"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143076099","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}

{"title":"Disparities in Diagnosis: A Call for Equity in Radiographic Axial Spondyloarthritis Care.","authors":"Shao-Hsien Liu, Jonathan Kay","doi":"10.3899/jrheum.2025-0092","DOIUrl":"10.3899/jrheum.2025-0092","url":null,"abstract":"","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"302-304"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143425974","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}

{"title":"Effect of Age on Rheumatic Immune-Related Adverse Events: Experience From the Canadian Research Group of Rheumatology in Immuno-Oncology (CanRIO).","authors":"Jenny Xiaoyu Li, Marie Hudson, Carrie Ye, Janet Roberts, Aurore Fifi-Mah, May Y Choi, Sabrina Hoa, C Thomas Appleton, Janet Pope, Nancy Maltez, Lourdes Gonzalez Arreola, Anthony Obrzut, Shahin Jamal","doi":"10.3899/jrheum.2024-0603","DOIUrl":"10.3899/jrheum.2024-0603","url":null,"abstract":"<p><strong>Objective: </strong>Immune checkpoint inhibitors (ICIs) have revolutionized cancer outcomes but are limited by immune-related adverse events (irAEs), including rheumatic irAEs (Rh-irAEs). Aging is associated with increased inflammation, referred to as \"inflammaging.\" In this study, we explore the effect of age on severity, frequency, and treatment of Rh-irAEs.</p><p><strong>Methods: </strong>Adults with new Rh-irAEs after ICI exposure are followed prospectively across 10 Canadian sites as part of the Canadian Research Group of Rheumatology in Immuno-Oncology (CanRIO) prospective cohort. In this study of patients seen between January 2020 and March 2023, we compare the severity of Rh-irAEs and number of irAEs between patients aged ≥ 65 years and < 65 years and explore potential epidemiologic, treatment-related, and phenotypic differences between the older and younger patients.</p><p><strong>Results: </strong>A total of 139 patients with de novo Rh-irAEs were included, 58 in the younger (aged < 65 yrs) and 81 in the older (aged ≥ 65 yrs) group. There were no significant differences in severity of Rh-irAEs (<i>P</i> = 0.84) or number of irAEs (<i>P</i> = 0.21), although there was a nonsignificant trend toward more younger patients than older patients with ≥ 3 irAEs (24% vs 14%). Types of treatment for Rh-irAEs were similar between the groups. ICI continuation did not differ. Within the ICI-related inflammatory arthritis subgroup, there was also no significant difference in the incidence of severe Rh-irAEs (<i>P</i> = 0.51).</p><p><strong>Conclusion: </strong>Similar numbers of overall irAEs and severity of Rh-irAEs were observed between older vs younger patients who developed Rh-irAEs after treatment with ICI therapy, suggesting that inflammaging does not play a significant role in Rh-irAEs. Larger studies are needed to explore potential differences in patient phenotypes.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"389-395"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142840049","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}

{"title":"Exome Sequencing of Chinese Patients With Anticitrullinated Protein Antibody-Positive Rheumatoid Arthritis in Singapore.","authors":"Khai Pang Leong, Mei Yun Yong, Ee Tzun Koh, Peter Pak Moon Cheung, Manjari Lahiri, Chin Teck Ng, Chia Mun Woo, Liuh Ling Goh, Sandy Hong Hong Lim, Preeti Dhanasekaran, Grace Yee May Cheah, Justina Wei Lyn Tan, Wenchao Hu, Mei Ling Chong, Vikrant Kumar, Sonia Davila","doi":"10.3899/jrheum.2024-0140","DOIUrl":"10.3899/jrheum.2024-0140","url":null,"abstract":"<p><strong>Objective: </strong>More than 130 susceptibility loci for rheumatoid arthritis (RA) have been identified with genome-wide association studies. To investigate the genetic predisposition of Chinese patients to anticitrullinated protein antibody (ACPA)-positive RA, we carried out an exome sequencing study.</p><p><strong>Methods: </strong>Patients were recruited from 3 major public hospitals in Singapore: Tan Tock Seng Hospital (TTSH), Singapore General Hospital, and the National University Hospital. Controls came from an established exome collection and from the TTSH Health Control Biobank. All the participants were of Chinese descent. We performed whole-exome sequencing (WES) in 595 ACPA-positive patients with RA and 1281 controls and validated the candidate variants by genotyping 795 RA cases and 600 controls.</p><p><strong>Results: </strong>The discovery cohort yielded 73 susceptibility single-nucleotide variants (SNVs) that reached statistical significance. In the validation study with an independent cohort, 2 SNVs remained significant: <i>PCNXL4</i> (<i>P</i> = 1.50 × 10^-5) and <i>DHRS7</i> (<i>P</i> = 6.02 × 10^-5). The majority of known susceptibility foci were not captured by exome sequencing.</p><p><strong>Conclusion: </strong>In this WES study of ACPA-positive RA in Chinese patients, we discovered 2 new variants in <i>PCNXL4</i> and <i>DHRS7</i> associated with risk for RA.</p>","PeriodicalId":50064,"journal":{"name":"Journal of Rheumatology","volume":" ","pages":"334-343"},"PeriodicalIF":3.6,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142774196","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}