Rheumatology Advances in Practice最新文献

{"title":"Patient and caregiver perspectives of an early integrated systemic sclerosis palliative care clinic: a qualitative study.","authors":"Carolyn Wicks, Julie McDonald, Laura Ross","doi":"10.1093/rap/rkaf098","DOIUrl":"10.1093/rap/rkaf098","url":null,"abstract":"<p><strong>Objectives: </strong>Individuals with systemic sclerosis (SSc) and their caregivers have unmet palliative care needs, yet the role of palliative medicine in SSc is unclear. In this study we aimed to explore patient and caregiver perspectives of a newly developed early, integrated SSc-specific palliative care clinic.</p><p><strong>Methods: </strong>All patients and caregivers who attended the SSc Palliative Care Clinic within the first 6 months of its implementation were invited to participate in a semi-structured phone interview. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis.</p><p><strong>Results: </strong>Six patient interviews, three caregiver interviews and three patient-caregiver dyad interviews were performed. The SSc Palliative Care Clinic was valued and accepted by patients and caregivers. The experience of living with and caring for SSc was described in all interviews. Four further themes were identified, describing the experience of attending the SSc Palliative Care Clinic: the valued integrated structure of the clinic, including the value of interdisciplinary care; respectful communication style of the physician that patients found non-judgemental, supportive and empathetic; the dichotomy of receiving palliative care that included the relief of discussing symptom burden and hope arising from active symptom management; and diverging views of future care discussions.</p><p><strong>Conclusion: </strong>The SSc Palliative Care Clinic was both accepted and valued by patients and caregivers. Findings highlighted the need for palliative care delivery to be sensitive and person-centred, with such care being observed to foster hope and optimism for both patients and their caregivers.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 4","pages":"rkaf098"},"PeriodicalIF":2.1,"publicationDate":"2025-08-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12448292/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145114037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pain intensity levels and their associations in people with rheumatic diseases in the UK: observational study using British Society for Rheumatology ePROMs data.","authors":"Kolawole Adeniran, Mumina Akthar, Ram Bajpai, James Galloway, Samantha L Hider, Richard Partington, Sara Muller, Ian C Scott","doi":"10.1093/rap/rkaf097","DOIUrl":"10.1093/rap/rkaf097","url":null,"abstract":"","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 3","pages":"rkaf097"},"PeriodicalIF":2.1,"publicationDate":"2025-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12422556/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145041232","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Diffuse fasciitis with restrictive ventilatory impairment and type 2 respiratory failure: a rare case report.","authors":"Rinko Katsuda, Akiko Kitagawa, Yoshihiro Seri, Misuzu Fujimori, Tetsuji Kawamura","doi":"10.1093/rap/rkaf096","DOIUrl":"10.1093/rap/rkaf096","url":null,"abstract":"","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 3","pages":"rkaf096"},"PeriodicalIF":2.1,"publicationDate":"2025-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12396808/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966959","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"What do users want from rheumatology telephone advice lines? A cross-sectional survey with the National Rheumatoid Arthritis Society.","authors":"Sarah Ryan, Ailsa Bosworth, Sally Matthews, Samantha Hider","doi":"10.1093/rap/rkaf095","DOIUrl":"10.1093/rap/rkaf095","url":null,"abstract":"<p><strong>Objectives: </strong>Telephone advice lines are a key component of National Health Service (NHS) rheumatology services and increased demand poses challenges for users and service providers. To explore the experiences of people using these services we undertook an evaluation survey with the National Rheumatoid Arthritis Society (NRAS).</p><p><strong>Methods: </strong>An online survey, co-designed with people with lived experience, was distributed by NRAS between August and September 2024. The survey collected data on respondent demographics, reasons for contacting advice line services, experiences using the advice line and how services could be improved.</p><p><strong>Results: </strong>A total of 1423 participants completed the survey. The majority were female [<i>n</i> = 1338 (94%)], of White British ethnicity [<i>n</i> = 1455 (95%)], had rheumatoid arthritis [<i>n</i> = 1288 (91%)], with a disease duration of >6 years [<i>n</i> = 975 (68%)] and were 61-80 years of age [<i>n</i> = 849 (56%)]. Most services were automated [<i>n</i> = 1273 (85%)], although participants would prefer to speak to someone directly [<i>n</i> = 889 (59%)]. The main reasons for contacting advice lines were experiencing a flare [<i>n</i> = 946 (66%)], pain [<i>n</i> = 876 (61%)] and medication concerns [<i>n</i> = 863 (61%)]. Most participants found the advice to be 'helpful to very helpful' [<i>n</i> = 847 (59%)] and were 'confident to very confident' [<i>n</i> = 866 (61%)] they could implement the advice given. A total of 839 (56%) calls were returned within 48 hours. There were 665 free-text responses on how telephone advice line services could be improved that focused on three main areas: increasing availability, improving response times and having more staff to deliver advice line support.</p><p><strong>Conclusion: </strong>The increasing demand for NHS rheumatology telephone advice line services requires a redesign of current systems to maximize accessibility and manage user expectations.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 3","pages":"rkaf095"},"PeriodicalIF":2.1,"publicationDate":"2025-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12422558/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145041315","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Weight gain following a diagnosis of anti-neutrophil cytoplasmic antibody-associated vasculitis.","authors":"Tania Salehi, Thomas French, Tariq E Farrah, Robert W Hunter","doi":"10.1093/rap/rkaf088","DOIUrl":"10.1093/rap/rkaf088","url":null,"abstract":"<p><strong>Objectives: </strong>The prevalence of obesity in ANCA-associated vasculitis (AAV) has not been well documented, despite an increased risk of cardiometabolic disease in these patients. We aimed to characterize changes in weight following a diagnosis of AAV and determine risk factors for gaining weight and becoming obese.</p><p><strong>Methods: </strong>We examined data from a single-centre registry of patients with AAV, diagnosed between 2003 and 2023. We evaluated changes in weight and BMI following diagnosis and determined the prevalence of obesity. Using linear regression, we identified factors contributing to an increase in BMI at 6 months. Logistic regression was used to define predictors for obesity at 6 months.</p><p><strong>Results: </strong>A total of 215 patients with AAV were included. Patients experienced a mean weight gain of 5.2% in the first 6 months; this was sustained for at least 2 years. A total of 69% of patients were overweight or obese at 6 months compared with 59% at baseline. Weight gain was greater following the first presentation compared with relapsing disease. Baseline factors associated with an increase in BMI at 6 months included higher eGFR [β = 0.70 (95% CI 0.36, 1.03), <i>P</i> < 0.001] and earlier year of presentation [β = 0.38 (95% CI 0.08, 0.69), <i>P</i> = 0.008]. Higher eGFR [adjusted odds ratio (aOR) 1.36 (95% CI 1.08, 2.72), <i>P</i> < 0.001] and baseline BMI [aOR 2.57 (95% CI 1.81, 3.64), <i>P</i> < 0.001] were associated with an increased likelihood of obesity at 6 months.</p><p><strong>Conclusion: </strong>Weight gain is common following a diagnosis of active AAV. This is now less pronounced than it was 2 decades ago. Better kidney function and higher baseline BMI are associated with a greater risk of being obese at 6 months. Many patients with AAV are likely to benefit from interventions aimed at achieving a healthy weight.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 3","pages":"rkaf088"},"PeriodicalIF":2.1,"publicationDate":"2025-08-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12342786/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144837552","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A prospective cohort study evaluating the role of quantifying sonographic inflammatory changes in GCA.","authors":"Colm Kirby, Danielle Molloy, Sharon Cowley, Rachael Flood, Diana Gheta, Ronan Mullan, Grainne Murphy, David Kane","doi":"10.1093/rap/rkaf085","DOIUrl":"10.1093/rap/rkaf085","url":null,"abstract":"<p><strong>Objectives: </strong>Vascular ultrasound (VUS) is a well-validated tool for diagnosing GCA [1]. The role of VUS in prognostication and disease-monitoring remains to be defined.</p><p><strong>Methods: </strong>This study compares intima-media thickness (IMT), Halo Count (HC), Halo Score (HS) and OMERACT GCA US Score (OGUS) at multiple time points in a prospective cohort of GCA patients to evaluate the role of sonographic vasculitis quantification in the diagnosis and management of GCA. Longitudinal trends and time-to-normalization of HC, HS and OGUS were evaluated. Correlation coefficients, AUC analysis and DeLong test were used to determine which patient factors may predict VUS outcomes and which patient factors are predictive of adverse events.</p><p><strong>Results: </strong>Forty-eight of 50 patients were followed up at 6 months and 27 at 12 months. Mean HC, HS, IMT and OGUS all declined significantly over 12 months. Of 48 patients, HC, HS and OGUS normalized in 21, 32 and 39 patients, respectively, by 6 months. Fulfilling 2022 ACR/EULAR Classification Criteria showed moderate correlation with baseline HC, HS and OGUS with higher classification criteria scores showing strong correlation with higher VUS outcome scores. HC, HS and OGUS were superior to all clinical and laboratory parameters for predicting future adverse events with OGUS outperforming HC and HS.</p><p><strong>Conclusion: </strong>VUS quantification scores performed better than other clinical variables in predicting future adverse events in GCA and OGUS is validated in a prospective cohort. These data suggest that VUS quantification scores are candidate biomarkers for GCA and may be important outcome variables in clinical trials.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 4","pages":"rkaf085"},"PeriodicalIF":2.1,"publicationDate":"2025-08-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12448863/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145114098","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sami patients in northern Norway experience longer symptoms duration before psoriatic arthritis diagnosis and have more axial involvement.","authors":"Marija I Rosic, Glenn Haugeberg, Gro Ø Eilertsen","doi":"10.1093/rap/rkaf092","DOIUrl":"10.1093/rap/rkaf092","url":null,"abstract":"<p><strong>Objectives: </strong>To compare Sami and non-Sami patients with PsA in northern Norway, where both the human antigen HLA-B27 and psoriasis are prevalent, particularly among the Sami population.</p><p><strong>Methods: </strong>A total of 536 adult PsA patients were recruited from the Norwegian Arthritis Registry and hospitals in northern Norway. All participants met the Classification Criteria for Psoriatic Arthritis. A questionnaire from the SAMINOR (a study in regions with Sami and Norwegian populations) was used to identify Sami and non-Sami patients. Demographic, clinical and laboratory parameters were compared between these groups. Binary logistic regression was used to adjust for age and gender differences.</p><p><strong>Results: </strong>The 60 Sami and 476 non-Sami patients identified were comparable in demographic characteristics and disease activity measurements. Sami patients experienced a longer duration of symptoms before diagnosis compared with non-Sami patients (4 years <i>vs</i> 2 years, <i>P</i> = 0.045), with a more pronounced delay among Sami men (5 years <i>vs</i> 1 year, <i>P</i> = 0.003). Sami men also had higher scores for back and/or pelvis pain (42 mm <i>vs</i> 31 mm, <i>P</i> = 0.034). Axial involvement was more frequent among Sami than non-Sami patients (30% <i>vs</i> 18%, <i>P</i> = 0.029), even after adjusting for gender and age (odds ratio 1.91, <i>P</i> = 0.041). Among patients with axial involvement, HLA-B27 was positive in 47.1% of Sami patients compared with 37% of non-Sami patients (<i>P</i> = 0.461).</p><p><strong>Conclusions: </strong>Sami patients face longer symptom durations before diagnosis and more frequent axial involvement than non-Sami patients. Sami men also report higher back/pelvic pain levels, though no differences between the cohorts in demographics or disease activity were observed.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 3","pages":"rkaf092"},"PeriodicalIF":2.1,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12375407/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966973","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Early diagnosis of axial spondyloarthritis among patients with chronic back pain using a clinical screening tool and referral strategy.","authors":"Abhijeet Danve, Swetha Alexander, Yuliya Afinogenova, Andrew Haims, Hong-Jai Park, Kaitlin R Maciejewski, Yanhong Deng, William Odell, Nicolas Page, Insoo Kang","doi":"10.1093/rap/rkaf086","DOIUrl":"10.1093/rap/rkaf086","url":null,"abstract":"<p><strong>Objective: </strong>Lack of timely referral of suspected axial spondyloarthritis (axSpA) patients to rheumatologists is an important modifiable reason for diagnostic delay of axSpA. We assessed the usefulness of a self-referral strategy using a clinical feature-based screening questionnaire (SQ) (A-tool).</p><p><strong>Methods: </strong>Finding axSpA (FaxSpA) was single-centre prospective study involving patients with chronic back pain (CBP). The A-tool, consisting of a three-question prescreen and eight-question SQ, was distributed to patients via the patient communication portal and university Facebook page. Patients with affirmative responses on all three prescreen questions, and three or more questions on SQ were eligible for study visit. Enrolled patients underwent history, physical examination, labs (CRP and HLA-B27) and imaging studies (X-ray and MRI of the pelvis). The clinician's judgement was considered the gold standard for diagnosing axSpA.</p><p><strong>Results: </strong>Eighty-six of the 100 enrolled patients completed all the study procedures, and 29 (34%) were diagnosed with axSpA. Seven patients had AS, and 22 had non-radiographic axSpA. Sensitivity and specificity of the individual A-tool questions for diagnosing axSpA ranged from 0.03 to 0.86 and 0.14 to 0.96, respectively. Positive likelihood ratios (+LR) of the individual items in the A-tool ranged from 0.84 to 1.34. There was low to moderate agreement between the patient responses on the online A-tool and the corresponding physician-confirmed responses.</p><p><strong>Conclusion: </strong>A tool-based strategy for self-referral of CBP patients is a simple, practical and feasible approach for early diagnosis of axSpA. We need a larger prospective study to validate our findings.</p>","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 3","pages":"rkaf086"},"PeriodicalIF":2.1,"publicationDate":"2025-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12401578/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144993395","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A case of concomitant systemic lupus erythematosus and Takayasu arteritis.","authors":"Lindsay N Moy, Amir Abidov, Mani Maheshwari","doi":"10.1093/rap/rkaf084","DOIUrl":"10.1093/rap/rkaf084","url":null,"abstract":"","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 3","pages":"rkaf084"},"PeriodicalIF":2.1,"publicationDate":"2025-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12311296/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144761156","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Comment on: Glucocorticoid discontinuation in systemic lupus erythematosus: a single-centre study. Reply.","authors":"Yaqi Zhang, Xuebing Feng","doi":"10.1093/rap/rkaf090","DOIUrl":"10.1093/rap/rkaf090","url":null,"abstract":"","PeriodicalId":21350,"journal":{"name":"Rheumatology Advances in Practice","volume":"9 3","pages":"rkaf090"},"PeriodicalIF":2.1,"publicationDate":"2025-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12366507/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144966954","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}