ARP Rheumatology最新文献

{"title":"Patients', caregivers and clinicians' perspectives on education and support about methotrexate: survey to 26 European Countries.","authors":"Cristiano Matos, Polly Livermore, Mariana Ortiz-Piña, Khadija El Aoufy, Kristina Buerki, Agnes Ágoston-Szabó, Darja Batšinskaja, Jana Melicharová, Marie-Louise Karlsson, Karlien Claes, Ana Isabel Rodriguez Vargas, Ellen Moholt, Ane Ludvigsen, Una Martin, Ulrike Erstling, Angela Camon, Ana Pais, Mikaella Konstantinou, Myrto Nikoloudaki, Souzi Makri, Bruno Silva, Cláudia Paiva, Elena Nikiphorou, Andrea Marques, Ricardo J O Ferreira","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Objectives: </strong>To assess patients', carers', nurses' and physicians' perspectives and experiences regarding patient education (PE) and support of Methotrexate (MTX) treatment in Europe.</p><p><strong>Methods: </strong>An international team of researchers and clinicians, including rheumatology nurses, a pharmacist, a rheumatologist, and three patient representatives, developed a survey. Common and sample-specific questions were conceived for adult patients or carers (≥18 years) of children/young people with RMDs, nurses, and physicians working in rheumatology practice in Europe. The survey was available in English and, for patients/carers, in eight additional languages, disseminated between May 2022 and May 2023. Ethics committee approval was obtained (116_CEIPC/2022_IPC).</p><p><strong>Results: </strong>A total of 1526 patients, 145 carers, 354 nurses, and 291 physicians (96% rheumatologists), from 26 European countries participated. Only 28% of patients had a PE with nurse when starting oral MTX, with a slight increase to 42% for the subcutaneous form, with variations across Europe (Northern=69%, Eastern=52%, Western=50%, Southern=23%). Patients' perspectives align with physicians, whereas nurses reported higher access rates. Around 77% of patients had/have concerns about side effects, which were discussed with health professionals in 69% of the cases, though 46% of these concerns remained unresolved. The priority ranking of topics to be addressed in PE was similar overall for the three subgroups.</p><p><strong>Conclusion: </strong>PE and support regarding MTX are unequal across Europe and can be improved by offering opportunities to clarify concerns through more access to nursing consultations. There is an overall agreement between patients and clinicians regarding key areas of education, although a tailored approach is required.</p>","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 2","pages":"91-105"},"PeriodicalIF":1.4,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592418","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Reliability and validity of the European Portuguese version of the ABILHAND questionnaire in Patients with Systemic Sclerosis.","authors":"Fernando Albuquerque, Marcelo Neto, Rodrigo Patrício, Margarida Vieira, Rúben Fernandes, Anabela Silva, Tânia Santiago, Maria João Salvador","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Systemic sclerosis (SSc) frequently affects hands, impairing its function and impacting quality of life. The ABILHAND-SSc is a patient-reported outcome measure (PROM) specifically designed to assess manual ability in SSc. Previously, an European Portuguese version has been translated and culturally adapted, but its psychometric properties remain to be validated. Therefore, we aim to validate the European Portuguese version of the ABILHAND-SSc in patients with systemic sclerosis (SSc) using Rasch analysis and classical test theory. A cross-sectional validation study was conducted in a tertiary rheumatology centre, including 53 Portuguese-speaking adults fulfilling ACR/EULAR 2013 classification criteria for SSc or VEDOSS classification criteria. Patients completed the ABILHAND-SSc along with other PROMs: HAQ-DI, SHAQ, SF-36v2, EQ-5D-5L, and ScleroID. Rasch analysis assessed item fit, dimensionality, targeting, and reliability. Test-retest reliability was evaluated in a stable subsample. Construct validity was examined via hypothesis testing and correlation with external instruments. The ABILHAND-SSc showed excellent internal consistency and Rasch-based reliability. Item fit statistics were within acceptable ranges, and no floor or ceiling effects were observed. Rasch and PCA analyses supported unidimensionality. Test-retest reliability was good. ABILHAND-SSc scores showed good correlation with related PROMs. Patients with diffuse cutaneous SSc had significantly lower manual ability than those with VEDOSS. In conclusion, the European Portuguese version of the ABILHAND-SSc is a valid, reliable, and feasible tool for assessing manual ability in patients with SSc. Its use in clinical practice and research may support patient-centred assessment and monitoring of hand function. Further validation in longitudinal and multicentre studies is warranted.</p>","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 2","pages":"123-137"},"PeriodicalIF":1.4,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592457","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Translation and cross-cultural adaptation of the mSQUASH into European Portuguese.","authors":"Ana Catarina Moniz, Mariana Emília Santos, Kaylene de Freitas, Filipa Tojal, Joelene de Freitas, Manuela Costa, Paula Araújo, Suzanne Arends, Sofia Ramiro, Fernando Pimentel-Santos, Jaime Cunha Branco, Alexandre Sepriano","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Regular physical activity is recommended for all patients with axial spondyloarthritis (axSpA), but measuring its frequency, duration and intensity can be challenging. The modified Short Questionnaire to ASsess Health-enhancing physical activity (mSQUASH) is a patient-reported outcome measurement designed to assess daily physical activity in patients with axSpA. This study aimed to translate the mSQUASH into European Portuguese and to perform field testing with cognitive debriefing interviews in patients with axSpA in Portugal.</p><p><strong>Methods: </strong>The mSQUASH was translated into European Portuguese following the Beaton method. Two bilingual translators independently translated the questionnaire from English to European Portuguese, which was then harmonized into a consensus version. Two other translators back translated the synthesized version into English. Translation discrepancies were resolved within a scientific committee, resulting in a preliminary version. The preliminary version was field-tested through semi-structured one-to-one interviews with 10 patients with axSpA with a broad range of socio-demographic and clinical characteristics.</p><p><strong>Results: </strong>The translation process was completed without major issues and minor disagreements were resolved in consensus meetings. During field testing, all participants found the questionnaire clear and appropriate. The median time to complete the questionnaire was 4 minutes and 15 seconds. Patient's feedback led to the correction of minor spelling errors and the addition of examples to the item \"Home maintenance\", which was misinterpreted as household activities by half of patients. The final version of the questionnaire, incorporating patient feedback, was approved by the scientific committee.</p><p><strong>Conclusion: </strong>The European Portuguese version of the mSQUASH demonstrated good linguistic properties and performed well in a field test with axSpA patients. Further studies are needed to evaluate its psychometric properties.</p>","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 2","pages":"115-122"},"PeriodicalIF":1.4,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592458","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Bywaters lesions.","authors":"Catarina Abreu, Susana Matias, Maria Margarida Cunha, Alice Morais Castro","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 2","pages":"169-170"},"PeriodicalIF":1.4,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592412","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"COVID-19 outcomes in hospitalized patients with underlying connective tissue disease-related interstitial lung disease vs. idiopathic interstitial pneumonia: a nationwide analysis 2019-2020.","authors":"Husam El Sharu, Metri Haddaden, Sukhvir Singh, Maria Romero Noboa, Teeba Mubaydeen, Shehabaldin Alqalyoobie, Marwa Sabha","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>In the context of the COVID-19 pandemic, understanding the influence of pre-existing Interstitial Lung Disease (ILD) on patient outcomes is crucial. This study aimed to compare the impact of COVID-19 on patients with Idiopathic Interstitial Pneumonia (IIP) versus Connective Tissue Disease-related ILD (CTD-ILD) in terms of mortality, length of hospital stay (LOS) and Intensive Care Unit (ICU) admission.</p><p><strong>Methods: </strong>The National Inpatient Sample (NIS) database for 2019-2020 identified adult patients hospitalized with COVID-19 and either IP or CTD-ILD. Patient demographics, comorbidities, and outcomes were analyzed.</p><p><strong>Results: </strong>Among 1,010,030 COVID-19 hospitalizations, 11,030 had ILD, with 1,105 associated with CTD. Although both IL and CTD-ILD groups had higher mortality rates than non-ILD patients, there was no significant difference in mortality between CTD-ILD and ILI groups. The odds ratio for mortality was 0.78 (95% CI 0.50-1.2, p = 0.3) for CTD-ILD compared to ILP patients and 1.54 (95% CI 1.03-2.31, p = 0.03) for CTD-ILD compared to non-ILD patients.</p><p><strong>Conclusion: </strong>This study underscores the importance of considering ILD subtypes in predicting COVID-19 outcomes. Despite demographic and comorbidity differences, mortality rates were comparable between CTD-ILD and IIP patients. Further research is needed to explore underlying mechanisms contributing to mortality in different ILD subtypes and the impact of specific rheumatological diseases and treatments on COVID-19 outcomes.</p>","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 2","pages":"106-114"},"PeriodicalIF":1.4,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592413","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Efficacy and Safety of Tocilizumab in Polymyalgia Rheumatica: A Systematic Review and Meta-analysis of Randomized Controlled Trials.","authors":"Brijesh Baral, Mandakini Parajuli, Juan Pinilla, Beatriz Quintanilha, Bishal Baral, Fidencio Cons Molina","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Introduction: </strong>The efficacy and safety of tocilizumab in patients with polymyalgia rheumatica (PMR) is not well established.</p><p><strong>Methods: </strong>We systematically searched PubMed, Cochrane, and Scopus to identify randomized controlled trials (RCTs) evaluating the efficacy and safety of tocilizumab compared with placebo in patients with PMR. The endpoints of interest were glucocorticoid-free remission at week 24, cumulative prednisolone dose at week 24, and adverse effects like risk of infection, gastrointestinal disorders, musculoskeletal and connective tissue disorders. We analyzed binary outcomes using risk ratios (RR) and continuous outcomes using mean difference (MD) with 95% confidence intervals (CI). Statistical analysis was performed using Review Manager 8.13 (Cochrane Collaboration).</p><p><strong>Results: </strong>Three RCTs with 188 patients were included, of whom 99 (53%) received tocilizumab and 89 (47%) received a placebo. The three RCTs varied significantly regarding patient populations and clinical settings: Bonelli et al. (2022) studied patients with early PMR receiving short-term glucocorticoids (GCs), Devauchelle-Pensec et al. (2022) included patients with GC-dependent PMR and a prespecified GC tapering strategy, and Spiera et al. (2021) analyzed patients with PMR associated with giant cell arteritis (GCA). Tocilizumab was associated with higher glucocorticoid-free remission at week 24 (RR 2.64; 95% CI 1.38 to 5.06; p= 0.003) and a lower cumulative prednisolone dose at week 24 (MD -2.52mg; CI -4.00 to -1.03; p= 0.0009) compared to placebo. However, there were no significant differences between the groups regarding safety outcomes, including the risk of infections (RR 1.19; 95% CI 0.92 to 1.52, p = 0.18), gastrointestinal disorders (RR 1.17; 95% CI 0.72 to 1.89, p = 0.52), and musculoskeletal and connective tissue disorders (RR 1.13; 95% CI 0.53 to 2.42, p = 0.75).</p><p><strong>Conclusion: </strong>Our findings indicate that tocilizumab significantly improved glucocorticoid-free remission rates and reduced the cumulative prednisolone dose at week 24. Notably, safety outcomes between tocilizumab and placebo groups were comparable. These findings support the efficacy of tocilizumab in treatment of PMR.</p>","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 2","pages":"145-153"},"PeriodicalIF":1.4,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592414","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"AI in medical research: boosting discovery or weakening critical search skills?","authors":"Annika Nack, Diego Benavent","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 2","pages":"76-79"},"PeriodicalIF":1.4,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592410","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Manifestations and predictors of neurologic involvement in Behçet's disease.","authors":"Margarida Lucas Rocha, Roberto Pereira da Costa, Ana Teodósio Chícharo, Joana Martins-Martinho, Carla Macieira, Cristina Ponte, Nikita Khmelinskii","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Background: </strong>Behçet's disease (BD) is a multisystem inflammatory disorder primarily affecting mucocutaneous tissues. Central nervous system (CNS) involvement, Neuro-BD (NBD), is a potentially severe manifestation of BD with a variable prevalence (1-59%).</p><p><strong>Aims: </strong>We aimed to characterize BD patients with CNS involvement and to identify predictors of this clinical subtype.</p><p><strong>Methods: </strong>We performed a single-centre observational retrospective study using data from patients fulfilling the 2013 International Criteria for BD registered at the Rheumatic Diseases Portuguese Registry (Reuma.pt) between October 2014 and May 2023. NBD was defined according to International Consensus Recommendation Criteria for NBD diagnosis. Demographic, clinical and treatment data were collected.</p><p><strong>Results: </strong>We included 157 patients with BD, 116 (74%) of them were females and 127 (81%) Caucasian with a mean±SD age at diagnosis of 32.0±12.2 years and the median (IQR) follow-up was 11.0 (11.8) years. NBD was diagnosed in 24 (15%) patients, with two (1%) cases identified at disease onset. The mean age at NBD diagnosis was 31.6±8.7 years, occurring 4.7 (1.0) years after BD onset. Among NBD patients, 15 (63%) had parenchymal, eight (33%) non-parenchymal and one (4%) mixed CNS involvement. Compared to patients without NBD, those with NBD were more likely to be non-Caucasian (27% vs 17%, p=0.026), have genital ulcers at disease onset (68% vs 34%, p=0.002) and present with ocular manifestations during the disease course (58% vs 35%, p=0.028). NBD patients more frequently received systemic glucocorticoids (100% vs 78%, p=0.008) and conventional synthetic disease-modifying anti-rheumatic drugs (86% vs 62%, p=0.035), particularly cyclophosphamide (48% vs 1%, p<0.001). Mortality was also significantly higher among NBD (13% vs 2%, p=0.026). On multivariable analysis, genital ulcers at presentation (OR 4.50, 1.68-12.06) and ocular involvement during the disease course (OR 2.69, 1.01-6.76) were independent predictors of CNS involvement.</p><p><strong>Conclusion: </strong>In summary, our cohort showed a 15% prevalence of CNS involvement, with parenchymal affection being the predominant form. Genital ulcers at onset and ocular manifestations emerged as independent predictors of NBD, serving as potential clinical markers for identifying high-risk patients. The high mortality rate observed among these patients underscores the severity of NBD and the critical need for prompt recognition.</p>","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 2","pages":"174-176"},"PeriodicalIF":1.4,"publicationDate":"2025-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144592417","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementing systematic screening of fracture risk and osteoporosis treatment in Portugal: a feasibility study protocol.","authors":"Ricardo J O Ferreira, Andréa Marques, Rafael Prieto-Moreno, Tiago Silva, Ana Pinho, Georgina Pimentel, Glenn Haugeberg, José Ap da Silva","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 1","pages":"69-71"},"PeriodicalIF":1.4,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143765268","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The role of bone histomorphometry in the management of metabolic bone disease.","authors":"Rafaela Nicolau, Luciano Pereira, Georgina Terroso, Carlos Vaz, Iva Brito, João Frazão","doi":"","DOIUrl":"","url":null,"abstract":"<p><strong>Purpose: </strong>Bone biopsy is the only technique capable of comprehensively assessing all bone parameters, including turnover, microarchitecture, and mineralization, yet its clinical utility is debated. This study evaluates its role in routine diagnostic and therapeutic applications.</p><p><strong>Methods: </strong>A retrospective analysis was conducted on 22 horizontal transiliac bone biopsies from 20 patients referred for rheumatology consultation between August 2016 and May 2022. Diagnoses included osteoporosis, adynamic bone disease, hyperparathyroidism-related bone disease, and osteomalacia.</p><p><strong>Results: </strong>Histopathological findings led to therapeutic strategies differing from standard anti-osteoporotic treatment in over one-third of cases. In certain cases, bone biopsy provided critical diagnostic insights that guided therapeutic decisions.</p><p><strong>Conclusion: </strong>Although advancements in non-invasive diagnostics exist, bone biopsy remains indispensable for a subset of patients, offering essential diagnostic and therapeutic insights that significantly influence clinical management.</p>","PeriodicalId":29669,"journal":{"name":"ARP Rheumatology","volume":"4 1","pages":"37-43"},"PeriodicalIF":1.4,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143765287","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}