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1.
BMC Health Serv Res ; 24(1): 795, 2024 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-38987769

RESUMO

BACKGROUND: In Sweden, approximately 2000 children live with Juvenile Idiopathic Arthritis (JIA). About half of them continue to have an active disease and need to transfer to adult rheumatology care. This study aimed to investigate Swedish adolescents' and parents´ perceptions of readiness for transition from pediatric to adult rheumatology care. METHODS: The study was a cross-sectional quantitative study. Patients at the pediatric rheumatology clinic at a university hospital in Sweden and members of The Swedish National Organization for Young Rheumatics aged 14-18 and their parents were invited to participate in the study. Data was collected with the Readiness for Transition Questionnaire (RTQ) focusing on adolescents' transition readiness, adolescents' healthcare behaviors and responsibility, and parental involvement. Data were analyzed with descriptive statistics. Comparative analyses were made using non-parametric tests with significance levels of 0.05 as well as factor analyses and logistic regression. RESULTS: There were 106 adolescents (85 girls, 20 boys) and 96 parents answering the RTQ. The analysis revealed that many adolescents and parents experienced that the adolescents were ill-prepared to take over responsibility for several healthcare behaviors, such as booking specialty care appointments, calling to renew prescriptions and communicating with medical staff on phone and to transfer to adult care. Parents and adolescents alike stated that it was especially difficult for the adolescents to take responsibility for healthcare behaviors meaning that the adolescents had to have direct interaction with the healthcare professionals (HCPs) at the paediatric rheumatology clinic, for example to renew prescriptions. It was evident that the adolescents who perceived they were ready to take responsibility for the aspects related to direct interaction with HCPs were more overall ready to be transferred to adult care. CONCLUSION: Adolescents need more support to feel prepared to transfer to adult care. With the results from this study, we can develop, customize, and optimize transitional care programs in Sweden for adolescents.


Assuntos
Artrite Juvenil , Pais , Reumatologia , Transição para Assistência do Adulto , Humanos , Adolescente , Masculino , Feminino , Suécia , Estudos Transversais , Pais/psicologia , Inquéritos e Questionários , Artrite Juvenil/psicologia , Artrite Juvenil/terapia , Adulto
2.
Adv Rheumatol ; 64(1): 52, 2024 Jul 10.
Artigo em Inglês | MEDLINE | ID: mdl-38987832

RESUMO

BACKGROUND: Systemic sclerosis (SSc) is a rare chronic autoimmune disease with heterogeneous manifestations. In the last decade, several clinical trials have been conducted to evaluate new treatment options for SSc. The purpose of this work is to update the recommendations of the Brazilian Society of Rheumatology in light of the new evidence available for the pharmacological management of SSc. METHODS: A systematic review including randomized clinical trials (RCTs) for predefined questions that were elaborated according to the Patient/Population, Intervention, Comparison, and Outcomes (PICO) strategy was conducted. The rating of the available evidence was performed according to the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology. To become a recommendation, at least 75% agreement of the voting panel was needed. RESULTS: Six recommendations were elaborated regarding the pharmacological treatment of Raynaud's phenomenon, the treatment (healing) and prevention of digital ulcers, skin involvement, interstitial lung disease (ILD) and gastrointestinal involvement in SSc patients based on results available from RCTs. New drugs, such as rituximab, were included as therapeutic options for skin involvement, and rituximab, tocilizumab and nintedanib were included as therapeutic options for ILD. Recommendations for the pharmacological treatment of scleroderma renal crisis and musculoskeletal involvement were elaborated based on the expert opinion of the voting panel, as no placebo-controlled RCTs were found. CONCLUSION: These guidelines updated and incorporated new treatment options for the management of SSc based on evidence from the literature and expert opinion regarding SSc, providing support for decision-making in clinical practice.


Assuntos
Doença de Raynaud , Reumatologia , Escleroderma Sistêmico , Escleroderma Sistêmico/complicações , Escleroderma Sistêmico/tratamento farmacológico , Humanos , Brasil , Reumatologia/normas , Doença de Raynaud/tratamento farmacológico , Sociedades Médicas , Doenças Pulmonares Intersticiais/tratamento farmacológico , Anticorpos Monoclonais Humanizados/uso terapêutico , Rituximab/uso terapêutico , Ensaios Clínicos Controlados Aleatórios como Assunto , Úlcera Cutânea/etiologia , Antirreumáticos/uso terapêutico
3.
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
5.
Adv Rheumatol ; 64(1): 49, 2024 Jun 30.
Artigo em Inglês | MEDLINE | ID: mdl-38951869

RESUMO

BACKGROUND: In general, patients are referred for rheumatological evaluation due to isolated laboratory abnormalities, especially antinuclear antibody (ANA) positivity, with the risk of more severe patients remaining on the waiting list for longer than desired. The aim of this study was to analyze the demographic, clinical, and laboratory information of patients referred to a specialized rheumatological care unit because of positive antinuclear antibody. METHODS: This is a retrospective study of 99 out of 1670 patients seen by the same rheumatologist between 01/01/2011 and 01/01/2019. Patients whose referrals were exclusively due to the ANA test result and the specialist's final diagnosis being "abnormal finding of serum immunological test" (ICD-10 R769) were included. Sociodemographic, clinical, and laboratory information were extracted from the consulting rheumatologist's chart. Descriptive statistics were used for data analysis. RESULTS: A total of 99 patients were included, most of whom were female (84.8%) with a median age of 49 years. At the moment of specialist's appointment, 97 patients (97.9%) repeated the ANA test, and 77 patients remained positive. Of these, only 35 (35.35%) were in a high titer range (greater than or equal to 1:320). Complete blood count for cytopenia's investigation was not performed in a high percentage of patients (22.2%), as well as urinalysis (31.3%). In addition, more than 70% of patients score 0 to 1 classification criteria for Systemic Lupus Erythematosus, according to SLE - ACR 1987 (American College of Rheumatology) and SLICC 2012 (Systemic Lupus International Collaborating Clinics). CONCLUSIONS: Most patients are still referred for specialized evaluation due to the misinterpretation of laboratory tests that were inappropriately requested in patients without clinical evidence of autoimmune rheumatic disease.


Assuntos
Anticorpos Antinucleares , Encaminhamento e Consulta , Humanos , Anticorpos Antinucleares/sangue , Feminino , Masculino , Pessoa de Meia-Idade , Estudos Transversais , Brasil , Estudos Retrospectivos , Adulto , Doenças Reumáticas/diagnóstico , Reumatologia , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/sangue , Lúpus Eritematoso Sistêmico/imunologia , Idoso
6.
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
7.
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
9.
Adv Rheumatol ; 64(1): 51, 2024 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-38982553

RESUMO

Sjogren's disease (SjD) is an autoimmune disease that is characterized not only by the sicca symptoms it causes but also by its systemic nature, which is capable of several and not yet fully understood extraglandular manifestations. To gain a clearer understanding of these manifestations as well as a better practical approach, a panel of experts from the Brazilian Society of Rheumatology conducted a systematic review and meta-analysis on the identification of epidemiologic and clinical features of the extraglandular manifestations present in ESSDAI (EULAR Sjogren´s syndrome disease activity index), followed by a voting panel with recommendations for clinical practice. This publication is complementary to others already published and covers cutaneous and hematological manifestations, with prevalence data generated by a meta-analysis of 13 clinical or laboratory manifestations and 6 clinical management recommendations.


Assuntos
Síndrome de Sjogren , Dermatopatias , Humanos , Síndrome de Sjogren/complicações , Brasil/epidemiologia , Dermatopatias/etiologia , Doenças Hematológicas/etiologia , Sociedades Médicas , Reumatologia/normas , Eritema Nodoso/etiologia , Crioglobulinemia/etiologia , Xeroftalmia/etiologia , Rosácea , Estomatite Aftosa/etiologia
13.
RMD Open ; 10(2)2024 Jun 12.
Artigo em Inglês | MEDLINE | ID: mdl-38866591

RESUMO

OBJECTIVE: European Alliance of Associations for Rheumatology (EULAR) task forces (TF) requires participation of ≥2 junior members, a health professional in rheumatology (HPR) and two patient research partners for the development of recommendations or points to consider. In this study, participation of these junior and representative members was compared with the one of traditional TF members (convenor, methodologist, fellow and expert TF members). METHODS: An online survey was developed and emailed to previous EULAR TF members. The survey comprised multiple-choice, open-ended and 0-100 rating scale (fully disagree to fully agree) questions. RESULTS: In total, 77 responded, 48 (62%) women. In total, 46 (60%) had participated as a junior or representative TF member. Most junior/representative members reported they felt unprepared for their first TF (10/14, 71%). Compared with traditional members, junior/representative members expressed a significantly higher level of uncertainty about their roles within the TF (median score 23 (IQR 7.0-52.0) vs 7 (IQR 0.0-21.0)), and junior/representative members felt less engaged by the convenor (54% vs 71%). Primary factors that facilitated interaction within a TF were experience, expertise and preparation (54%), a supportive atmosphere (42%) and a clear role (12%). CONCLUSION: Juniors, patients and HPR experience various challenges when participating in a EULAR TF. These challenges differ from and are generally less pronounced than those experienced by traditional TF members. The convenor should introduce the participants to the tasks, emphasise the value of their contributions and how to prepare accordingly for the TF meeting.


Assuntos
Comitês Consultivos , Pessoal de Saúde , Reumatologia , Humanos , Feminino , Inquéritos e Questionários , Masculino , Pessoal de Saúde/psicologia , Adulto , Europa (Continente) , Pessoa de Meia-Idade
14.
Pediatr Rheumatol Online J ; 22(1): 60, 2024 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-38840147

RESUMO

BACKGROUND: Many children with rheumatic and musculoskeletal diseases are unrecognized. Identifying these children requires health care provider awareness, knowledge, and skills to recognize disease features and how (and when) to refer to specialist care. The aim of this paper is to highlight the need for better access to health care, review the essential role that education and virtual care play to address unmet need in low resource areas and especially to expand workforce capacity. Using collaborative partnerships, virtual platforms, and innovative assessment methods, musculoskeletal care and education can be delivered to reach a greater audience than ever before. Increased awareness through multiple initiatives and readily available resources are imperative to improve global rheumatology care. CONCLUSION: The needs of children with rheumatic diseases and musculoskeletal conditions are vastly underserved around the world resulting in preventable morbidity and mortality. Expanded implementation of virtual education and e-health care platforms provides an opportunity to increase access to care for children globally.


Assuntos
Pediatria , Reumatologia , Humanos , Reumatologia/educação , Criança , Pediatria/educação , Pediatria/métodos , Acessibilidade aos Serviços de Saúde , Doenças Reumáticas/terapia , Doenças Musculoesqueléticas/terapia , Telemedicina
17.
Z Rheumatol ; 83(5): 425-426, 2024 Jun.
Artigo em Alemão | MEDLINE | ID: mdl-38829413
18.
Front Immunol ; 15: 1409555, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38915408

RESUMO

Rheumatoid arthritis (RA) is an autoimmune disease causing progressive joint damage. Early diagnosis and treatment is critical, but remains challenging due to RA complexity and heterogeneity. Machine learning (ML) techniques may enhance RA management by identifying patterns within multidimensional biomedical data to improve classification, diagnosis, and treatment predictions. In this review, we summarize the applications of ML for RA management. Emerging studies or applications have developed diagnostic and predictive models for RA that utilize a variety of data modalities, including electronic health records, imaging, and multi-omics data. High-performance supervised learning models have demonstrated an Area Under the Curve (AUC) exceeding 0.85, which is used for identifying RA patients and predicting treatment responses. Unsupervised learning has revealed potential RA subtypes. Ongoing research is integrating multimodal data with deep learning to further improve performance. However, key challenges remain regarding model overfitting, generalizability, validation in clinical settings, and interpretability. Small sample sizes and lack of diverse population testing risks overestimating model performance. Prospective studies evaluating real-world clinical utility are lacking. Enhancing model interpretability is critical for clinician acceptance. In summary, while ML shows promise for transforming RA management through earlier diagnosis and optimized treatment, larger scale multisite data, prospective clinical validation of interpretable models, and testing across diverse populations is still needed. As these gaps are addressed, ML may pave the way towards precision medicine in RA.


Assuntos
Artrite Reumatoide , Aprendizado de Máquina , Medicina de Precisão , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/terapia , Humanos , Medicina de Precisão/métodos , Reumatologia/métodos , Gerenciamento Clínico
19.
Adv Rheumatol ; 64(1): 48, 2024 06 18.
Artigo em Inglês | MEDLINE | ID: mdl-38890752

RESUMO

OBJECTIVE: To develop the second evidence-based Brazilian Society of Rheumatology consensus for diagnosis and treatment of lupus nephritis (LN). METHODS: Two methodologists and 20 rheumatologists from Lupus Comittee of Brazilian Society of Rheumatology participate in the development of this guideline. Fourteen PICO questions were defined and a systematic review was performed. Eligible randomized controlled trials were analyzed regarding complete renal remission, partial renal remission, serum creatinine, proteinuria, serum creatinine doubling, progression to end-stage renal disease, renal relapse, and severe adverse events (infections and mortality). The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was used to develop these recommendations. Recommendations required ≥82% of agreement among the voting members and were classified as strongly in favor, weakly in favor, conditional, weakly against or strongly against a particular intervention. Other aspects of LN management (diagnosis, general principles of treatment, treatment of comorbidities and refractory cases) were evaluated through literature review and expert opinion. RESULTS: All SLE patients should undergo creatinine and urinalysis tests to assess renal involvement. Kidney biopsy is considered the gold standard for diagnosing LN but, if it is not available or there is a contraindication to the procedure, therapeutic decisions should be based on clinical and laboratory parameters. Fourteen recommendations were developed. Target Renal response (TRR) was defined as improvement or maintenance of renal function (±10% at baseline of treatment) combined with a decrease in 24-h proteinuria or 24-h UPCR of 25% at 3 months, a decrease of 50% at 6 months, and proteinuria < 0.8 g/24 h at 12 months. Hydroxychloroquine should be prescribed to all SLE patients, except in cases of contraindication. Glucocorticoids should be used at the lowest dose and for the minimal necessary period. In class III or IV (±V), mycophenolate (MMF), cyclophosphamide, MMF plus tacrolimus (TAC), MMF plus belimumab or TAC can be used as induction therapy. For maintenance therapy, MMF or azathioprine (AZA) are the first choice and TAC or cyclosporin or leflunomide can be used in patients who cannot use MMF or AZA. Rituximab can be prescribed in cases of refractory disease. In cases of failure in achieving TRR, it is important to assess adherence, immunosuppressant dosage, adjuvant therapy, comorbidities, and consider biopsy/rebiopsy. CONCLUSION: This consensus provides evidence-based data to guide LN diagnosis and treatment, supporting the development of public and supplementary health policies in Brazil.


Assuntos
Imunossupressores , Nefrite Lúpica , Sociedades Médicas , Nefrite Lúpica/diagnóstico , Nefrite Lúpica/tratamento farmacológico , Humanos , Imunossupressores/uso terapêutico , Brasil , Creatinina/sangue , Proteinúria/diagnóstico , Proteinúria/etiologia , Ácido Micofenólico/uso terapêutico , Anticorpos Monoclonais Humanizados/uso terapêutico , Reumatologia/normas , Rituximab/uso terapêutico , Biópsia , Ciclofosfamida/uso terapêutico , Leflunomida/uso terapêutico , Glucocorticoides/uso terapêutico , Hidroxicloroquina/uso terapêutico , Azatioprina/uso terapêutico , Indução de Remissão , Ciclosporina/uso terapêutico , Medicina Baseada em Evidências , Consenso , Progressão da Doença , Falência Renal Crônica , Ensaios Clínicos Controlados Aleatórios como Assunto
20.
Int J Rheum Dis ; 27(5): e15157, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38720410

RESUMO

Large language models (LLMs) like GPT-4 and Claude are catalyzing transformation across medical research including rheumatology. This review examines their applications, highlighting the pivotal role of prompt engineering in effectively guiding LLMs. Key aspects explored include literature synthesis, data analysis, manuscript drafting, coding assistance, privacy considerations, and generative artificial intelligence integrations. While LLMs accelerate workflows, reliance without apt prompting jeopardizes accuracy. By methodically constructing prompts and gauging model outputs, researchers can maximize relevance and utility. Locally run open-source models also offer data privacy protections. As LLMs permeate rheumatology research, developing expertise in strategic prompting and assessing model limitations is critical. With proper oversight, LLMs markedly boost scholarly productivity.


Assuntos
Pesquisa Biomédica , Reumatologia , Humanos , Inteligência Artificial
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