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1.
Z Rheumatol ; 83(6): 460-470, 2024 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-39093449

RESUMO

BACKGROUND: The updates to the European recommendations and the German guidelines for the treatment of systemic sclerosis are expected shortly, which are very good evidence-based guidelines for all those treating the disease; however, there are still disease manifestations with insufficient studies and current study results that were published after the review of the literature for the guidelines and might be of interest to the reader. OBJECTIVE AND METHODS: The aim of this work is to provide an overview of the publications in the last year that are interesting from the authors' point of view. The aim is to provide practically relevant information on the current state of knowledge that can supplement the guidelines. RESULTS: The pathogenesis of systemic sclerosis (SSc) is becoming better understood in its interplay between environmental factors and the development of autoantibodies. There have also been overviews of the manifestation and prognosis of cardiac involvement in the last year. The American Thoracic Society issued the first guidelines for the treatment of interstitial lung disease in SSc. There are an increasing number of studies that suggest that disease-modulating combination therapies, such as rituximab and mycophenolate mofetil (MMF) are beneficial. Work addressing the involvement of joints suggests that inflammatory changes are common. Current options for the treatment of gastrointestinal involvement are presented. CONCLUSION: The diagnosis and treatment of systemic sclerosis is making progress and many symptoms and complications are treatable. Nevertheless, much remains to be done to improve the quality of life of the patients.


Assuntos
Guias de Prática Clínica como Assunto , Escleroderma Sistêmico , Escleroderma Sistêmico/terapia , Escleroderma Sistêmico/diagnóstico , Escleroderma Sistêmico/complicações , Humanos , Reumatologia/normas , Medicina Baseada em Evidências , Alemanha , Imunossupressores/uso terapêutico
2.
Adv Rheumatol ; 64(1): 59, 2024 Aug 14.
Artigo em Inglês | MEDLINE | ID: mdl-39143637

RESUMO

Advances in DNA sequencing technologies, especially next-generation sequencing (NGS), which is the basis for whole-exome sequencing (WES) and whole-genome sequencing (WGS), have profoundly transformed immune-mediated rheumatic disease diagnosis. Recently, substantial cost reductions have facilitated access to these diagnostic tools, expanded the capacity of molecular diagnostics and enabled the pursuit of precision medicine in rheumatology. Understanding the fundamental principles of genetics and diversity in genetic variant classification is a crucial milestone in rheumatology. However, despite the growing availability of DNA sequencing platforms, a significant number of autoinflammatory diseases (AIDs), neuromuscular disorders, hereditary collagen diseases, and monogenic bone diseases remain unsolved, and variants of uncertain significance (VUS) pose a formidable challenge to addressing these unmet needs in the coming decades. This article aims to provide an overview of the clinical indications and interpretation of comprehensive genetic testing in the medical field, addressing the related complexities and implications.


Assuntos
Testes Genéticos , Doenças Reumáticas , Humanos , Testes Genéticos/métodos , Doenças Reumáticas/genética , Doenças Reumáticas/diagnóstico , Sequenciamento de Nucleotídeos em Larga Escala , Reumatologia , Sequenciamento do Exoma , Doenças Neuromusculares/genética , Doenças Neuromusculares/diagnóstico , Doenças Hereditárias Autoinflamatórias/genética , Doenças Hereditárias Autoinflamatórias/diagnóstico , Reumatologistas
3.
N Z Med J ; 137(1600): 21-30, 2024 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-39088806

RESUMO

AIM: This audit describes variation in the time from referral to starting disease modifying drug (DMARD) for people with newly diagnosed seropositive rheumatoid arthritis (RA), how frequently this was within the recommended 6 weeks and whether regional, service-level or patient-level factors were associated with this variation. METHOD: Rheumatologists submitted data on new patients with a new diagnosis of rheumatoid factor and/or cyclic-citrullinated peptide antibody positive RA. The association between visit funding, ethnicity, socio-economic deprivation, rurality, local specialist staffing levels and the time to DMARD treatment was assessed using Cox proportional-hazard models. RESULTS: Data were collected on 355 patients over 12 months. Overall, 64.8% of patients commenced DMARD treatment within 6 weeks of referral and this was associated with rheumatologist FTE per 100,000 population (adjusted HR 2.47, 95%CI 1.27-4.81; p=0.008) and the rurality (Geographic Classification of Health [GCH]) of the patient (for R2 compared to U1 adjusted HR 0.20, 95%CI 0.09-0.43; p<0.001). There was no association between time to DMARD and ethnicity or socio-economic deprivation. CONCLUSION: There was significant variation in time to DMARD treatment, mainly related to variation in rheumatologist staffing levels and patient rurality. Rheumatologist staffing levels of 1.0 FTE/100,000 population was associated with 80% of patients meeting the recommended 6-week time to DMARD treatment.


Assuntos
Antirreumáticos , Artrite Reumatoide , Humanos , Nova Zelândia , Artrite Reumatoide/tratamento farmacológico , Masculino , Feminino , Pessoa de Meia-Idade , Antirreumáticos/uso terapêutico , Adulto , Idoso , Encaminhamento e Consulta/estatística & dados numéricos , Tempo para o Tratamento/estatística & dados numéricos , Reumatologia , Auditoria Médica
4.
5.
Z Rheumatol ; 83(6): 511-513, 2024 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-39136742
7.
Z Rheumatol ; 83(6): 515, 2024 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-39136744
8.
Z Rheumatol ; 83(Suppl 2): 249-284, 2024 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-39136764

RESUMO

BACKGROUND: Rheumatology in Germany is facing major challenges. The need for rheumatological care is increasing and can no longer be met in some regions for capacity reasons. Too many people with an inflammatory rheumatic disease (IRD) have to forego appropriate care or receive it too late. The 4th new edition of the memorandum of the German Society for Rheumatology and Clinical Immunology (DGRh) provides information on rheumatological care in Germany. It was produced under the leadership of the DGRh together with the Professional Association of German Rheumatologists (BDRh), the Association of Acute Rheumatology Clinics (VRA), the German Rheumatism League (DRL) and the German Rheumatism Research Center (DRFZ). METHODS: The memorandum describes the current state and development of the following areas: number of people with IRD, outpatient, inpatient and rehabilitative care structures, number of specialists in rheumatology, education and training, quality of care, health economic aspects and digital care concepts. Proposals for health policy measures to safeguard rheumatological care are presented. RESULTS: Prevalence: approximately 1.8 million adults in Germany have an IRD. The prevalence is increasing, due to changes in the demographic structure of the population, improved diagnostics, treatment and longer survival. Care structures: outpatient specialist care (ASV) for rheumatic diseases is developing as a cross-sectoral care model for hospital outpatient clinics and rheumatology practices. Hospitals have been able to be certified as rheumatology centers since 2020, which enables structural developments. Specialists in rheumatology: as of 31 December 2023, there were 1164 specialists in rheumatology working in Germany. This included 715 physicians accredited to work in practices for national health assurance patients, 39% of whom were employees. In hospitals, 39% of doctors worked part-time. At least 2 rheumatology specialists per 100,000 adults are needed, i.e. around 1400, in order to provide adequate care. This means that there is a shortage of around 700 rheumatology specialists in the outpatient sector alone. Of all working specialists, 30% are currently aged 60 years old and over. Medical training: only 10 out of 38 (26%) state universities have an independent chair in rheumatology. In addition, 11 rheumatology departments are subordinate to a nonrheumatology chair. In the rheumatology-integration into student training (RISA) III study, only 16 out of 36 faculties fulfilled the recommended minimum number of compulsory hours of student rheumatology teaching. Continuing education in rheumatology: the annual postgraduate training qualifications do not cover the demand for rheumatology specialists, which is additionally increasing due to intensified workload, reduced capacities through retirement, and part-time work. Quality of care: since the introduction of highly effective medication patients with IRD have a much better chance of achieving remission of their disease. With early initiation of targeted therapy, the lives of many patients are hardly restricted at all: however, waiting times for a first rheumatological visit often last more than 3 months. Quality target is a first consultation within the first 6 weeks after the onset of symptoms. Models for early consultation, delegation of medical services, structured patient training and digital care concepts have been positively evaluated but are not covered financially. COSTS: the total annual costs for inflammatory joint diseases alone amount to around 3 billion euros. The direct costs have significantly risen since the introduction of biologics, while the indirect costs for sick leave, disability and hospitalization have fallen. CONCLUSION: The core demands of this memorandum are a significant and sustainable increase in the number of further training positions in the outpatient and inpatient sector, the creation of chairs or at least independent departments for rheumatology at all universities and the further implementation of new and cross-sectoral forms of care. This will ensure modern needs-based rheumatological care for all patients in the future.


Assuntos
Doenças Reumáticas , Reumatologia , Alemanha , Reumatologia/educação , Doenças Reumáticas/terapia , Doenças Reumáticas/epidemiologia , Humanos , Sociedades Médicas , Alergia e Imunologia/educação , Alergia e Imunologia/tendências , Atenção à Saúde , Previsões
9.
Lupus Sci Med ; 11(2)2024 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-39097409

RESUMO

OBJECTIVE: To assess organ damage, with emphasis on the cardiovascular system, over the different stages of the disease in a large SLE cohort. METHODS: Multicentre, longitudinal study of a cohort of 4219 patients with SLE enrolled in the Spanish Society of Rheumatology Lupus Registry. Organ damage was ascertained using the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI). We longitudinally analysed SDI (globally and for each domain) over time only in the 1274 patients whose dates of damage events had been recorded. RESULTS: During the first year after diagnosis of SLE, 20% of the 1274 patients presented with new damage manifestations. At years 2 and 3, new damage was recorded in 11% and 9% of patients. The annual percentage of patients with new damage after year 5 decreased to 5%. In the first year with the disease, most damage was accumulated in the musculoskeletal, neuropsychiatric and renal systems; in later stages, most damage was in the musculoskeletal, ocular and cardiovascular systems. Considering 'cerebrovascular accident' and 'claudication for 6 months' as cardiovascular items, the cardiovascular system was the second most affected system during the early stages of SLE, with 19% of the patients who presented with damage affected at first year after diagnosis. During the late stages, 20-25% of the patients presenting with new damage did so in this modified cardiovascular domain of the SDI. CONCLUSIONS: New damage occurs mainly during the first year following diagnosis of SLE. Cardiovascular damage is relevant in both the early and the late stages of the disease. Strategies to prevent cardiovascular damage should be implemented early after diagnosis of SLE.


Assuntos
Sistema Cardiovascular , Lúpus Eritematoso Sistêmico , Sistema de Registros , Humanos , Lúpus Eritematoso Sistêmico/complicações , Lúpus Eritematoso Sistêmico/epidemiologia , Estudos Longitudinais , Masculino , Feminino , Adulto , Espanha/epidemiologia , Pessoa de Meia-Idade , Sistema Cardiovascular/fisiopatologia , Doenças Cardiovasculares/epidemiologia , Índice de Gravidade de Doença , Progressão da Doença , Reumatologia
10.
J Assoc Physicians India ; 72(8): 15-21, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39163056

RESUMO

AIM: The study aims to identify factors influencing referral patterns and delays in rheumatoid arthritis (RA) patients across clinical settings in India. MATERIALS AND METHODS: A prospective, multicenter, observational study collected data from eight centers using the Indian Rheumatology Association (IRA) database. Patient-related factors and referral factors were determined based on patient narration. The modified PRASAD scale categorized patients' socioeconomic status. RESULTS: The study included 4,643 RA patients from eight centers. Data from 35 patients were excluded due to inconsistent reporting of diagnosis and delay. Lack of awareness was the predominant factor causing the delay in referral. Approximately, 39% of patients were referred to the rheumatology specialty within 6 months of disease onset, while 26% reported later, and 34% reported over 2 years. Referral delays were linked to socioeconomic factors in Madhya Pradesh (21.43%) and West Bengal (28.57%). Lack of awareness about the disease and rheumatology specialty was highest in West Bengal (100%), followed by Delhi and Rajasthan (93.70%). Misconceptions about modern medicine, reluctance to refer patients to the rheumatologist, and previous treatment by other specialities were other factors influencing referral delay. Primary care clinicians' unawareness of the rheumatology specialty was the primary reason for referral delay in Gujarat (33.56%) and Delhi and Rajasthan (25.18%). CONCLUSION: Both patient and healthcare professional-related factors contribute to referral delays in RA patients. Major factors causing referral delays include reluctance to refer and inadequate knowledge about rheumatology among primary care physicians and the general public. Patients' education and occupation also influence the timing of referrals to specialty care.


Assuntos
Artrite Reumatoide , Encaminhamento e Consulta , Reumatologia , Humanos , Artrite Reumatoide/terapia , Artrite Reumatoide/diagnóstico , Índia/epidemiologia , Encaminhamento e Consulta/estatística & dados numéricos , Masculino , Feminino , Estudos Prospectivos , Pessoa de Meia-Idade , Adulto , Bases de Dados Factuais , Fatores Socioeconômicos , Conhecimentos, Atitudes e Prática em Saúde , Diagnóstico Tardio
11.
Mod Rheumatol ; 34(5): 1006-1012, 2024 Aug 20.
Artigo em Inglês | MEDLINE | ID: mdl-39086077

RESUMO

OBJECTIVES: Recently, a joint group of the American College of Rheumatology (ACR) and the European Alliance of Associations for Rheumatology (EULAR) proposed new criteria for Takayasu arteritis (TAK) (the 2022 ACR/EULAR criteria). This study applied the 2022 ACR/EULAR criteria to patients with previously diagnosed TAK based on the 1990 ACR criteria and investigated the concordance rate between the two criteria according to the four imaging modalities. METHODS: This study reviewed the medical records of 179 patients who met the 1990 ACR criteria for TAK. The imaging modalities included conventional angiography, computed tomography angiography, fluorodeoxyglucose-positron emission tomography, and magnetic resonance angiography. RESULTS: Regardless of the imaging modalities, the concordance rate between the two criteria was 85.5% when including all patients, whereas it increased to 98.1% when only patients aged ≤60 years were included. Among the four imaging modalities, computed tomography angiography exhibited the highest concordance rate between the two criteria (85.6%). The concordance rate among patients aged >60 years was 95.7%. Only one patient aged 50-60 years was reclassified as having both TAK and giant cell arteritis. CONCLUSIONS: The concordance rate was 85.5% regardless of the imaging modalities and increased to 86.9% on simultaneous computed tomography angiography and fluorodeoxyglucose-positron emission tomography imaging.


Assuntos
Arterite de Takayasu , Humanos , Arterite de Takayasu/diagnóstico por imagem , Arterite de Takayasu/diagnóstico , Pessoa de Meia-Idade , Feminino , Adulto , Masculino , Adulto Jovem , Idoso , Reumatologia/normas , Reumatologia/métodos , Angiografia por Tomografia Computadorizada , Angiografia por Ressonância Magnética/métodos , Adolescente , Tomografia por Emissão de Pósitrons/métodos , Estudos Retrospectivos
12.
Pediatr Rheumatol Online J ; 22(1): 64, 2024 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-38982530

RESUMO

BACKGROUND: The American College of Rheumatology (ACR)/Childhood Arthritis and Rheumatology Research Alliance (CARRA) Mentoring Interest Group (AMIGO) is an inter-institutional mentorship program launched to target mentorship gaps within pediatric rheumatology. Initial program evaluation indicated increased mentorship access. Given the small size of the pediatric rheumatology workforce, maintaining a consistent supply of mentors was a potential threat to the longevity of the network. Our aims were to: (i) describe the sustainability of AMIGO over the period 2011-2018, (ii) highlight ongoing benefits to participants, and (iii) describe challenges in the maintenance of a mentorship network. METHODS: A mixed-methods approach centered on a quality improvement framework was used to report on process and outcomes measures associated with AMIGO annual cycles. RESULTS: US and Canada Pediatric rheumatology workforce surveys identified 504 possible participants during the time period. As of fall 2018, 331 unique individuals had participated in AMIGO as a mentee, mentor or both for a program response rate of 66% (331/504). Survey of mentees indicated high satisfaction with impact on general career development, research/scholarship and work-life balance. Mentors indicated increased sense of connection to the community and satisfaction with helping mentees despite limited perceived benefit to their academic portfolios. Based on AMIGO's success, a counterpart program for adult rheumatology, Creating Adult Rheumatology Mentorship in Academia (CARMA), was launched in 2018. CONCLUSIONS: Despite the challenges of a limited workforce, AMIGO continues to provide consistent access to mentorship opportunities for the pediatric rheumatology community. This experience can inform approaches to mentorship gaps in other academic subspecialties.


Assuntos
Mentores , Pediatria , Avaliação de Programas e Projetos de Saúde , Melhoria de Qualidade , Reumatologia , Humanos , Reumatologia/educação , Pediatria/educação , Estados Unidos , Canadá , Tutoria/métodos , Estudos Longitudinais , Masculino
13.
Comput Biol Med ; 179: 108920, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39047506

RESUMO

This study introduces RheumaLinguisticpack (RheumaLpack), the first specialised linguistic web corpus designed for the field of musculoskeletal disorders. By combining web mining (i.e., web scraping) and natural language processing (NLP) techniques, as well as clinical expertise, RheumaLpack systematically captures and curates structured and unstructured data across a spectrum of web sources including clinical trials registers (i.e., ClinicalTrials.gov), bibliographic databases (i.e., PubMed), medical agencies (i.e. European Medicines Agency), social media (i.e., Reddit), and accredited health websites (i.e., MedlinePlus, Harvard Health Publishing, and Cleveland Clinic). Given the complexity of rheumatic and musculoskeletal diseases (RMDs) and their significant impact on quality of life, this resource can be proposed as a useful tool to train algorithms that could mitigate the diseases' effects. Therefore, the corpus aims to improve the training of artificial intelligence (AI) algorithms and facilitate knowledge discovery in RMDs. The development of RheumaLpack involved a systematic six-step methodology covering data identification, characterisation, selection, collection, processing, and corpus description. The result is a non-annotated, monolingual, and dynamic corpus, featuring almost 3 million records spanning from 2000 to 2023. RheumaLpack represents a pioneering contribution to rheumatology research, providing a useful resource for the development of advanced AI and NLP applications. This corpus highlights the value of web data to address the challenges posed by musculoskeletal diseases, illustrating the corpus's potential to improve research and treatment paradigms in rheumatology. Finally, the methodology shown can be replicated to obtain data from other medical specialities. The code and details on how to build RheumaLpack are also provided to facilitate the dissemination of such resource.


Assuntos
Processamento de Linguagem Natural , Reumatologia , Humanos , Internet , Mineração de Dados/métodos , Descoberta do Conhecimento/métodos , Doenças Musculoesqueléticas
14.
J Med Internet Res ; 26: e55542, 2024 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-39042425

RESUMO

BACKGROUND: The diagnosis of inflammatory rheumatic diseases (IRDs) is often delayed due to unspecific symptoms and a shortage of rheumatologists. Digital diagnostic decision support systems (DDSSs) have the potential to expedite diagnosis and help patients navigate the health care system more efficiently. OBJECTIVE: The aim of this study was to assess the diagnostic accuracy of a mobile artificial intelligence (AI)-based symptom checker (Ada) and a web-based self-referral tool (Rheport) regarding IRDs. METHODS: A prospective, multicenter, open-label, crossover randomized controlled trial was conducted with patients newly presenting to 3 rheumatology centers. Participants were randomly assigned to complete a symptom assessment using either Ada or Rheport. The primary outcome was the correct identification of IRDs by the DDSSs, defined as the presence of any IRD in the list of suggested diagnoses by Ada or achieving a prespecified threshold score with Rheport. The gold standard was the diagnosis made by rheumatologists. RESULTS: A total of 600 patients were included, among whom 214 (35.7%) were diagnosed with an IRD. Most frequent IRD was rheumatoid arthritis with 69 (11.5%) patients. Rheport's disease suggestion and Ada's top 1 (D1) and top 5 (D5) disease suggestions demonstrated overall diagnostic accuracies of 52%, 63%, and 58%, respectively, for IRDs. Rheport showed a sensitivity of 62% and a specificity of 47% for IRDs. Ada's D1 and D5 disease suggestions showed a sensitivity of 52% and 66%, respectively, and a specificity of 68% and 54%, respectively, concerning IRDs. Ada's diagnostic accuracy regarding individual diagnoses was heterogenous, and Ada performed considerably better in identifying rheumatoid arthritis in comparison to other diagnoses (D1: 42%; D5: 64%). The Cohen κ statistic of Rheport for agreement on any rheumatic disease diagnosis with Ada D1 was 0.15 (95% CI 0.08-0.18) and with Ada D5 was 0.08 (95% CI 0.00-0.16), indicating poor agreement for the presence of any rheumatic disease between the 2 DDSSs. CONCLUSIONS: To our knowledge, this is the largest comparative DDSS trial with actual use of DDSSs by patients. The diagnostic accuracies of both DDSSs for IRDs were not promising in this high-prevalence patient population. DDSSs may lead to a misuse of scarce health care resources. Our results underscore the need for stringent regulation and drastic improvements to ensure the safety and efficacy of DDSSs. TRIAL REGISTRATION: German Register of Clinical Trials DRKS00017642; https://drks.de/search/en/trial/DRKS00017642.


Assuntos
Inteligência Artificial , Reumatologia , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Reumatologia/métodos , Adulto , Estudos Cross-Over , Doenças Reumáticas/diagnóstico , Internet , Idoso , Encaminhamento e Consulta/estatística & dados numéricos
15.
Arthritis Res Ther ; 26(1): 132, 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39014499

RESUMO

BACKGROUND: The increased availability of myositis autoantibodies represents new possibilities and challenges in clinical practice (Lundberg IE, Tjärnlund A, Bottai M, Werth VP, Pilkington C, de Visser M, et al. 2017 European League Against Rheumatism/American College of Rheumatology classification criteria for adult and juvenile idiopathic inflammatory myopathies and their major subgroups. Ann Rheum Dis. 2017;76:1955-64. https://doi.org/10.1136/annrheumdis-2017-211468 .). The aim of this study was to perform a retrospective data analysis of patient cases with positive myositis autoantibodies to analyse their significance in routine rheumatology practice. METHODS: A monocentric analysis of all the orders used to determine myositis autoantibodies from July 2019 to May 2022 in the Department of Rheumatology, Krankenhaus Porz am Rhein, Cologne, Germany, was carried out. RESULTS: In the defined time interval, a total of 71,597 laboratory values for the antibodies mentioned above were obtained. A total of 238 different positive autoantibodies ​​were detected in 209 patients. Idiopathic inflammatory myopathy was diagnosed in 37 patients (18%), and inflammatory rheumatic diseases other than idiopathic inflammatory myopathy were diagnosed in 90 patients (43%). No inflammatory rheumatic disease was diagnosed in 82 patients (39%). General clusters of clinical manifestations were observed. CONCLUSIONS: In our cohort, we were able to show that a relevant proportion of patients with positive myositis antibodies did not have idiopathic inflammatory myopathies or inflammatory rheumatic diseases. This finding indicates the importance of myositis autoantibodies in this group of patients. However, further studies on the course of symptoms and examination results in patients without inflammatory rheumatic diseases and with positive myositis antibodies are necessary.


Assuntos
Autoanticorpos , Miosite , Reumatologia , Humanos , Miosite/imunologia , Miosite/sangue , Miosite/diagnóstico , Estudos Retrospectivos , Masculino , Feminino , Autoanticorpos/imunologia , Autoanticorpos/sangue , Pessoa de Meia-Idade , Adulto , Idoso , Doenças Reumáticas/imunologia , Doenças Reumáticas/diagnóstico , Adulto Jovem , Relevância Clínica
16.
Pediatr Rheumatol Online J ; 22(1): 67, 2024 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-39039515

RESUMO

BACKGROUND: The spectrum of Juvenile Idiopathic Arthritis (JIA) in Africa is still largely unknown. We thus set out to illustrate how we set up the PAFLAR JIA registry and describe the clinical profile of Juvenile Idiopathic Arthritis across various regions in Africa. METHODS: We carried out a retrospective observational cohort study where collaborators were trained on use of the existing PAFLAR REDCAP database to enter data for the JIA patients currently under their care capturing their epidemiological data, clinical features, laboratory investigations, diagnosis and therapy at initial diagnosis. Descriptive statistics including means, standard deviations, medians, interquartile ranges (IQR) for continuous variables and proportions for categorical variables were calculated as appropriate. Tests for difference between groups were performed between categorical variables using Pearson's chi-square or Fisher's exact tests. All analyses were performed using SPSS version 22 software. RESULTS: We enrolled 302 patients, 58.6% (177 of 302) of whom were female. The median age of disease onset was 7 years (range 3-11 years) and the median age at diagnosis was 8.5 years (range 5-12 years). The median duration delay in diagnosis was 6 months (range 1-20.8 months). The JIA categories included Systemic JIA 18.9% (57), Oligoarticular JIA 19.2% (83), Polyarticular RF + ve 5% (15), Polyarticular RF-ve 17.9% (54), Enthesitis Related Arthritis (ERA) 18.2% (55), Psoriatic Arthritis 7% (21) and undifferentiated JIA 5.6% (17). As regards treatment the commonest therapies were NSAID therapy at 31.1%, synthetic DMARDs at 18.1%, synthetic DMARDs combined with NSAIDs at 17.5% and steroid therapy at 9.6%. Biological DMARDs accounted for 2.3% of therapies offered to our patients at diagnosis. The average JADAS score was 10.3 (range 4.8-18.2) and the average CHAQ score was 1.3 (range 0.7-2.0). CONCLUSION: Our study highlights strategies involved in setting up a Pan-African paediatric rheumatology registry that embraces our broad diversity and the vast spectrum of JIA in Africa while comparing the various therapies available to our patients. The PAFLAR JIA registry strives to ensure a comprehensive representation of the diverse healthcare landscapes within the continent. Further longitudinal observation studies are required to ascertain the long-term outcomes of our patients and ultimately help inform policy to create a more favorable health ecosystem to support the healthcare needs of JIA patients in Africa.


Assuntos
Artrite Juvenil , Sistema de Registros , Humanos , Feminino , Masculino , Artrite Juvenil/epidemiologia , Artrite Juvenil/tratamento farmacológico , Artrite Juvenil/diagnóstico , Criança , Estudos Retrospectivos , Pré-Escolar , África/epidemiologia , Antirreumáticos/uso terapêutico , Sociedades Médicas , Reumatologia
17.
RMD Open ; 10(3)2024 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-38977357

RESUMO

The implementation of proven effective pharmacological and non-pharmacological interventions into routine rheumatology practice is a lengthy and complex process. Bridging this gap between research and practice is crucial. Hybrid implementation effectiveness studies, integrating effectiveness and implementation aspects, emerge as a proactive and innovative solution to shorten the process of translation of proven interventions into clinical practice. This viewpoint provides an overview of the various types of hybrid implementation effectiveness studies including examples from rheumatology research practice, explains their pivotal role in speeding up the implementation of rheumatology research results and concludes with practical recommendations for the conduct of hybrid implementation effectiveness studies.


Assuntos
Reumatologia , Humanos , Pesquisa Translacional Biomédica , Doenças Reumáticas/terapia
18.
Semin Musculoskelet Radiol ; 28(4): 511-512, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-39074732

RESUMO

This history page is dedicated to the memory and achievements of the French rheumatologist Stanislas de Sèze whose name is connected to the so-called de Sèze view, used to evaluate the sacroiliac joints, the lumbar and lower thoracic spine, pelvis, and hip joints on a single anteroposterior radiograph.


Assuntos
Radiologia , Humanos , História do Século XX , Radiologia/história , França , Reumatologia/história , História do Século XXI
19.
Med Clin North Am ; 108(5): 829-842, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-39084836

RESUMO

Seven of the 11 newer medications recently or soon to be approved to treat rheumatologic diseases discussed in this article are biologic agents and reflect the current ability of science to target specific components of the immune system. The other agents are molecules that are directed against specific immune pathway targets as well. All have shown superiority to placebo and in some cases have been compared to currently accepted therapies. Safety issues are generally centered around infections due to the immune-interrupting nature of these therapies.


Assuntos
Antirreumáticos , Doenças Reumáticas , Humanos , Doenças Reumáticas/tratamento farmacológico , Antirreumáticos/uso terapêutico , Anticorpos Monoclonais Humanizados/uso terapêutico , Anticorpos Monoclonais/uso terapêutico , Abatacepte/uso terapêutico , Rituximab/uso terapêutico , Adalimumab/uso terapêutico , Etanercepte/uso terapêutico , Proteína Antagonista do Receptor de Interleucina 1/uso terapêutico , Reumatologia/métodos , Ustekinumab/uso terapêutico , Proteínas Recombinantes de Fusão
20.
Reumatol Clin (Engl Ed) ; 20(6): 326-333, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38991826

RESUMO

INTRODUCTION AND OBJECTIVES: The Colegio Mexicano de Reumatología (CMR) is a corporation whose brand has two elements-image and identity-that differentiate it from other corporations. We evaluated aspects of CMR's corporate image and identity. SUBJECTS AND METHODS: To assess corporate image, we designed a survey using proof-of-concept and discrete-choice-experiments approaches. It assessed which definition (orthopedist, rheumatologist, or rehabilitator) was most meaningful in four pain scenarios in healthy adults from the country's Western region. We used discourse analysis and five readability indices of the CMR website to assess corporate identity. RESULTS: In total, 700 respondents were included. For every rheumatologist chosen in the hand scenario, respondents chose 1.13 orthopedists and 0.70 rehabilitators. For every rheumatologist chosen in the knee scenario, respondents chose 2.36 orthopedists and 0.64 rehabilitators, whereas 0.85 orthopedists and 0.58 rehabilitators were chosen in the arthritis scenario. Only 38% of the respondents preferred the CMR's definition of a rheumatologist to describe a rheumatologist. The younger age group preferred orthopedists to rheumatologists (50% vs. 31%, p<0.001). In the arthritis scenario, the choice of rheumatologist increased from 27% in the elementary school group to 49% in the university group (p<0.001). Mother was the most influential in healthcare seeking. The discursive analysis revealed that the CMR is positioned as a "we" restricted to "colleagues;" the patient did not have agentive representation. The semiotic structure of the CMR's mission/vision was deemed imprecise and lacking in statements of value and purpose; the readability scores indicated that the text was challenging and dry. CONCLUSIONS: The CMR's corporate image does not differentiate it from other health providers. CMR's identity seems ambiguous with restricted directionality. It seems pertinent to redefine the CMR.


Assuntos
Corporações Profissionais , Humanos , Feminino , Adulto , Masculino , Pessoa de Meia-Idade , México , Reumatologia , Ortopedia , Idoso , Adulto Jovem , Inquéritos e Questionários
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