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1.
Inquiry ; 61: 469580241247021, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38801153

RESUMO

Workforce shortage and the increasing burden of rheumatic and musculoskeletal diseases lead to extreme time constraints in rheumatology outpatient care. Digital services promise to facilitate care by relieving employees and unleash new capacities. This study aims to explore the perspectives of early adopter health care professionals (HCP) on digital transformation in outpatient rheumatology. In-depth qualitative interviews were conducted with rheumatology nurses and physicians in 3 German rheumatology outpatient clinics, each characterized by an advanced level of digital adaption. Qualitative data were subsequently analyzed using deductive-inductive qualitative content analysis. Interviews with 11 rheumatology nurses and 5 rheumatologists were completed. Three key themes emerged from the qualitative analysis: (i) Digital transformation of care; (ii) impact of digital transformation on health care delivery; and (iii) perceived drivers of successful digitalization. The interviews revealed that digital technologies are widely used throughout the complete patient pathway. Digitalization enables more continuity and flexibility in rheumatology care. Patient information can be electronically obtained in a standardized manner prior to planned visits, enabling an informed consultation and more time for in-depth patient discussion. Although digitalization restructures work, it can also increase the current workload. Improved accessibility for patient calls leads to more work for HCP. Important drivers of successful digital technology implementation are low-threshold and interoperable services, a medical team that is interested and educated in eHealth, and comprehensive patient information and onboarding. Digital transformation is increasingly redefining rheumatology care. While accelerating communication and workflows, improved service accessibility leads to more work for HCP.


Assuntos
Instituições de Assistência Ambulatorial , Entrevistas como Assunto , Pesquisa Qualitativa , Reumatologia , Humanos , Instituições de Assistência Ambulatorial/organização & administração , Masculino , Feminino , Alemanha , Tecnologia Digital , Atenção à Saúde , Pessoa de Meia-Idade , Adulto , Saúde Digital
2.
Int J Rheum Dis ; 27(5): e15175, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38720575

RESUMO

OBJECTIVE: To analyze antiphospholipid antibody (aPL)-positive patients using the 2023 American College of Rheumatology/The European Alliance of Associations for Rheumatology (ACR/EULAR) antiphospholipid syndrome (APS) classification criteria and compare the revised Sapporo criteria and the 2023 ACR/EULAR criteria and evaluate whether the 2023 ACR/EULAR criteria provide added value over the revised Sapporo criteria. METHODS: In this descriptive study, 94 aPL-positive patients (with or without APS diagnosis) were identified from two hospital-based registries (Gazi and Hacettepe University). Patients were classified into four groups to compare both criteria sets. These four groups are as follows: (1) patients classified with only the revised Sapporo criteria; (2) patients classified with only the 2023 ACR/EULAR APS criteria; (3) patients classified with both two criteria sets; and (4) patients classified with neither two criteria set. RESULTS: Of the 94 patients, 11 were classified with only the revised Sapporo criteria; one with only the 2023 ACR/EULAR APS criteria; 52 with both criteria sets; and 30 with neither set of criteria. For these 94 patients, the operating characteristics of the 2023 ACR/EULAR APS criteria, using the revised Sapporo criteria as the gold standard, the 2023 ACR/EULAR APS entry criteria demonstrated 100% sensitivity, and the 2023 ACR/EULAR APS classification criteria demonstrated 98% specificity and 82.5% sensitivity. CONCLUSION: The study emphasizes the importance of recognizing differences in clinical manifestations, such as early pregnancy loss without severe preeclampsia (PEC) and/or severe placental insufficiency (PI) and calls for a nuanced discussion on anticardiolipin (aCL) and anti-beta 2-glycoprotein-I (anti-ß2GPI) immunoglobulin G (IgG) cutoff values.


Assuntos
Anticorpos Antifosfolipídeos , Síndrome Antifosfolipídica , Valor Preditivo dos Testes , Sistema de Registros , Humanos , Síndrome Antifosfolipídica/diagnóstico , Síndrome Antifosfolipídica/imunologia , Síndrome Antifosfolipídica/sangue , Feminino , Masculino , Adulto , Gravidez , Pessoa de Meia-Idade , Anticorpos Antifosfolipídeos/sangue , Biomarcadores/sangue , Reprodutibilidade dos Testes , Turquia , Adulto Jovem , Reumatologia/normas
3.
Lupus ; 33(8): 804-815, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38631342

RESUMO

OBJECTIVE: In systemic lupus erythematosus, poor disease outcomes occur in young adults, patients identifying as Black or Hispanic, and socioeconomically disadvantaged patients. These identities and social factors differentially shape care access and quality that contribute to lupus health disparities in the US. Thus, our objective was to measure markers of care access and quality, including rheumatology visits (longitudinal care retention) and lupus-specific serology testing, by race and ethnicity, neighborhood disadvantage, and geographic context. METHODS: This cohort study used a geo-linked 20% national sample of young adult Medicare beneficiaries (ages 18-35) with lupus-coded encounters and a 1-year assessment period. Retention in lupus care required a rheumatology visit in each 6-month period, and serology testing required ≥1 complement or dsDNA antibody test within the year. Multivariable logistic regression models were fit for visit-based retention and serology testing to determine associations with race and ethnicity, neighborhood disadvantage, and geography. RESULTS: Among 1,036 young adults with lupus, 39% saw a rheumatologist every 6 months and 28% had serology testing. White beneficiaries from the least disadvantaged quintile of neighborhoods had higher visit-based retention than other beneficiaries (64% vs 30%-60%). Serology testing decreased with increasing neighborhood disadvantage quintile (aOR 0.80; 95% CI 0.71, 0.90) and in the Midwest (aOR 0.46; 0.30, 0.71). CONCLUSION: Disparities in care, measured by rheumatology visits and serology testing, exist by neighborhood disadvantage, race and ethnicity, and region among young adults with lupus, despite uniform Medicare coverage. Findings support evaluating lupus care quality measures and their impact on US lupus outcomes.


Assuntos
Disparidades em Assistência à Saúde , Lúpus Eritematoso Sistêmico , Medicare , Reumatologia , Humanos , Lúpus Eritematoso Sistêmico/terapia , Estados Unidos , Adulto , Masculino , Feminino , Adulto Jovem , Adolescente , Disparidades em Assistência à Saúde/estatística & dados numéricos , Retenção nos Cuidados/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Estudos de Coortes , Modelos Logísticos , Negro ou Afro-Americano/estatística & dados numéricos
4.
Health Expect ; 27(2): e14049, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38623822

RESUMO

OBJECTIVE: First Nations Australians experience a higher burden and severity of Rheumatic Disease with poorer outcomes than the general population. Despite a widely acknowledged need to improve health outcomes, there has been minimal research assessing existing models of care from a First Nations perspective in Australia. The objective of this study was to describe First Nations experiences and barriers and enablers to accessing a hospital-based adult Rheumatology service in Sydney. METHODS: A qualitative study using semi-structured interviews was undertaken. Patients who self-identified as First Nations attending the Prince of Wales Hospital Rheumatology Clinic in 2021 were invited to participate. Interviews were conducted face-to-face or by telephone using culturally-appropriate Yarning methods with an Aboriginal Health Worker (AHW) at the request of participants. Thematic analysis was done in consultation with an Aboriginal Reference Group (ARG). RESULTS: Four categories, which encapsulated 11 themes were identified. Participants reported barriers to care such as logistics of the referral process, not feeling culturally safe because of uncomfortable clinic environments and health worker behaviours, inadequate cultural support and community perceptions of the specialty. Enabling factors included family member involvement, AHW support and telehealth consultation. CONCLUSION: The current model of care perpetuates access challenges for First Nations Australians within rheumatology. Barriers to care include the delayed referral process, limited cultural responsivity in the clinic environment and poor cross-cultural communication. There is a need for models of care that are co-designed with First Nations Peoples to address these barriers. PATIENT AND PUBLIC CONTRIBUTION: Participants were First Nations Australians with lived experience attending the rheumatology clinic. All interviewees were offered the opportunity to review their transcripts to ensure trustworthiness of the data. Preliminary thematic analysis was conducted in partnership with the AHW who has over 20 years experience. Following preliminary coding, a list of themes were presented to the ARG for iterative discussion and refinement. The ARG provided community representation and ensured that First Nations voices were privileged in the analysis. It's intended that the findings of this study will support the upcoming co-design of a First Nations health service for Rheumatology patients.


Assuntos
Serviços de Saúde do Indígena , Reumatologia , Humanos , Austrália , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Hospitais Urbanos
5.
Pediatr Rheumatol Online J ; 22(1): 41, 2024 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-38589909

RESUMO

BACKGROUND: Temporomandibular joint (TMJ) involvement is an often underrecognized complication of juvenile idiopathic arthritis (JIA) that can cause decreased mandibular growth, altered facial morphology, and orofacial pain. It is estimated that the TMJ is affected in 30-45% of children with JIA. Standardized physical examination and imaging evaluations are important in accurately assessing active TMJ arthritis and sequalae. Little is known about the rate at which providers evaluate TMJ involvement in their clinical practice. METHODS: Data were obtained from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Data fields related to assessment for TMJ arthritis were added in 2019. Patients were included in the study if they had a diagnosis of JIA and had data recorded between January 2020 and August 2021. Standard descriptive statistics were used to describe demographic and clinical features. RESULTS: A total of 17,761 visits were reviewed for a total of 7473 patients with JIA. A total of 52.7% of patients had maximal mouth opening (MMO) recorded as finger breadths or total incisal distance (TID). Only 8% had TID measured. A total of 5.0% had MRI with contrast performed. A total of 939 patients had a diagnosis of TMJ arthritis. Of these, 28.5% had an MRI documented, 83% had an MMO documented, and 40% had TID measured. Few patient-level characteristics were statistically related to having MMO assessed. MRI was more likely to be obtained in older and in female patients. MMO was recorded at a given visit > 80% of the time at 17 sites, and it was recorded < 1% of the time at 8 sites. MRIs were infrequently performed at all sites, with 27 sites having no MRIs obtained and only 7 sites having an MRI obtained at > 10% of visits. CONCLUSIONS: MMO is not consistently measured in patients with JIA, and it is rarely measured quantitatively. Similarly, TMJ MRIs are rarely obtained in patients with JIA. Site of care is more associated with TMJ assessments than patient-level characteristics. These data suggest that provider education is needed to improve the assessment of the TMJ in patients with JIA to enable earlier recognition and prevent long-term complications.


Assuntos
Artrite Juvenil , Reumatologia , Transtornos da Articulação Temporomandibular , Criança , Humanos , Feminino , Idoso , Artrite Juvenil/diagnóstico , Artrite Juvenil/diagnóstico por imagem , Estudos Retrospectivos , Articulação Temporomandibular/diagnóstico por imagem , Transtornos da Articulação Temporomandibular/diagnóstico por imagem , Transtornos da Articulação Temporomandibular/etiologia , Imageamento por Ressonância Magnética/métodos
7.
Curr Rheumatol Rep ; 26(6): 214-221, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38466514

RESUMO

PURPOSE OF REVIEW: This critical review begins by presenting the history of Juvenile Idiopathic Arthritis (JIA) management. To move the conversation forward in addressing the current shortcomings that exist in the clinical management of children living with JIA, we argue that to date, the advancement of successful treatments for JIA has been historically slow. Factors implicated in this situation include a lack of rigorous research, JIA being considered a rare disease, and JIA's idiopathic and complex pathophysiology. RECENT FINDINGS: Despite the well-intended legislative changes to increase paediatric research, and the major advancements seen in molecular medicine over the last 30 years, globally, paediatric rheumatology services are still failing to meet the current benchmarks of best practice. Provoking questions on how the longstanding health care disparities of poor access and delayed treatment for children living with JIA can be improved, to improve healthcare outcomes. Globally, paediatric rheumatology services are failing to meet the current benchmarks of best practice. Raising awareness of the barriers hindering JIA management is the first step in reducing the current health inequalities experienced by children living with JIA. Action must be taken now, to train and well-equip the paediatric rheumatology interdisciplinary workforce. We propose, a resource-efficient way to improve the quality of care provided could be achieved by embedding digital health into clinical practice, to create an integrative care model between the children, general practice and the paediatric rheumatology team. To improve fragmented service delivery and the coordination of interdisciplinary care, across the healthcare system.


Assuntos
Artrite Juvenil , Benchmarking , Equidade em Saúde , Reumatologia , Humanos , Artrite Juvenil/terapia , Criança , Disparidades em Assistência à Saúde , Tecnologia Digital , Saúde Digital
8.
Semin Arthritis Rheum ; 66: 152422, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38461757

RESUMO

OBJECTIVE: To increase awareness and understanding of the principles of Equity, Diversity, and Inclusivity (EDI) within Outcome Measures in Rheumatology's (OMERACT) members. For this, we aimed to obtain ideas on how to promote and foster these principles within the organization and determine the diversity of the current membership in order to focus future efforts. METHODS: We held a plenary workshop session at OMERACT 2023 with roundtable discussions on barriers and solutions to increased diversity within OMERACT. We conducted an anonymous, web-based survey of members to record characteristics including population group, gender identity, education level, age, and ability. RESULTS: The workshop generated ideas to increase diversity of participants across the themes of building relationships [12 topics], materials and methods [5 topics], and conference-specific [6 topics]. Four hundred and seven people responded to the survey (25 % response rate). The majority of respondents were White (75 %), female (61 %), university-educated (94 %), Christian (42 %), spoke English at home (60 %), aged 35 to 55 years (50 %), and did not report a disability (64 %). CONCLUSION: OMERACT is committed to improving its diversity. Next steps include strategic recruitment of members to the EDI working group, drafting an EDI mission statement centering equity and inclusivity in the organization, and developing guidance for the OMERACT Handbook to help all working groups create actionable plans for promoting EDI principles.


Assuntos
Diversidade Cultural , Reumatologia , Humanos , Feminino , Masculino , Sociedades Médicas , Adulto , Pessoa de Meia-Idade , Inquéritos e Questionários
9.
Pediatrics ; 153(Suppl 2)2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-38300008

RESUMO

The Pediatric Rheumatology (PRH) workforce supply in the United States does not meet the needs of children. Lack of timely access to PRH care is associated with poor outcomes for children with rheumatic diseases. This article is part of a Pediatrics supplement focused on anticipating the future pediatric subspecialty workforce supply. It draws on information in the literature, American Board of Pediatrics data, and findings from a model that estimates the future supply of pediatric subspecialists developed by the Sheps Center for Health Services Research at the University of North Carolina at Chapel Hill, Strategic Modeling and Analysis Ltd., and the American Board of Pediatrics Foundation. PRH has a smaller workforce per capita of children than most other pediatric subspecialties. The model demonstrates that the clinical workforce equivalent of pediatric rheumatologists in 2020 was only 0.27 per 100 000 children, with a predicted increase to 0.47 by 2040. Although the model predicts a 72% increase in providers, this number remains inadequate to provide sufficient care given the number of children with rheumatic diseases, especially in the South and West regions. The likely reasons for the workforce shortage are multifactorial, including lack of awareness of the field, low salaries compared with most other medical specialties, concerns about working solo or in small group practices, and increasing provider retirement. Novel interventions are needed to increase the workforce size. The American College of Rheumatology has recognized the dire consequences of this shortage and has developed a workforce solutions initiative to tackle these problems.


Assuntos
Doenças Reumáticas , Reumatologia , Humanos , Criança , Saúde da Criança , Pediatras , Recursos Humanos
10.
BMJ Open ; 14(2): e082515, 2024 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-38387983

RESUMO

INTRODUCTION: COVID-19 catalysed a rapid move to provide care away from the hospital using online communication platforms. Technology enabled care (TEC) continues to be an important driver in progressing future healthcare services. Due to the complex and chronic nature of conditions seen within paediatric rheumatology, TEC may lead to better outcomes. Despite some growth in published literature into the adoption of TEC in paediatric rheumatology, there is limited synthesis. The aim of this review is to provide a comprehensive understanding and evaluation of the adoption of TEC by patients in paediatric rheumatology services, to establish best practices. METHODS AND ANALYSIS: This proposed mixed-methods systematic review will be conducted by searching a wide variety of healthcare databases, grey literature resources and associated charities and societies, for articles reported in English language. Data extraction will include population demographics, technology intervention, factors affecting adoption of intervention and consequent study outcomes. A parallel-results convergent synthesis design is planned, with independent syntheses of quantitative and qualitative data, followed by comparison of the findings of each synthesis using a narrative approach. Normalisation process theory will be used to identify, characterise and explain implementation factors. The quality of included articles will be assessed using the Mixed Methods Appraisal Tool for research papers and the Authority, Accuracy, Coverage, Objectivity, Date, Significance checklist for grey literature. Overall confidence in quality and strength of evidence will be assessed using the Confidence in the Evidence from Reviews of Qualitative Research tool. ETHICS AND DISSEMINATION: Ethical approval is not required due to the nature of this mixed-methods systematic review. The findings will be disseminated via a peer-reviewed journal, relevant conferences and any other methods (eg, via NHS Trust or NIHR YouTube channels) as advised by paediatric rheumatology patients. PROSPERO REGISTRATION NUMBER: CRD42023443058.


Assuntos
Reumatologia , Criança , Humanos , Adolescente , Atenção à Saúde , Hospitais , Processos Mentais , Pesquisa Qualitativa , Revisões Sistemáticas como Assunto
11.
Z Rheumatol ; 83(4): 306-315, 2024 May.
Artigo em Alemão | MEDLINE | ID: mdl-38381191

RESUMO

AIM: For diseases caused by calcium pyrophosphate deposition (CPPD), validated classification criteria were previously lacking. In this article the recently developed and validated classification criteria are translated, explained, and assessed. METHODS: In recent years a multinational research group developed classification criteria for CPPD disease with the support by the European Alliance of Associations for Rheumatology (EULAR) and the American College of Rheumatology (ACR), following an established method. The developed criteria were finally validated in an independent cohort. The translation and annotation of the new first classification criteria were carried out in an iterative procedure in consensus with the authors. RESULTS: The presence of a crowned dens syndrome or calcium pyrophosphate crystals in the synovial fluid in patients with pain, swelling or sensitivity of the joints (entry criterion) is sufficient for the classification as CPPD disease, where the symptoms cannot be completely explained by another rheumatic disease (exclusion criterion). If these symptoms are not present, a count of more than 56 points based on weighted criteria comprised of clinical features and the results of laboratory and imaging investigations can be included for classification as a CPPD disease. These criteria had a sensitivity of 92.2% and a specificity of 87.9% in the derivation cohorts (190 CPPD cases and 148 mimics), whereas the sensitivity was 99.2% and the specificity 92.5% in the validation cohorts (251 CPPD cases and 162 mimics). CONCLUSION: The ACR/EULAR classification criteria 2023 of a CPPD disease will facilitate clinical research in this field. The use in the clinical routine will show how practical the criteria are.


Assuntos
Condrocalcinose , Sensibilidade e Especificidade , Condrocalcinose/classificação , Condrocalcinose/diagnóstico , Humanos , Alemanha , Reprodutibilidade dos Testes , Tradução , Reumatologia/normas , Pirofosfato de Cálcio/metabolismo , Terminologia como Assunto , Diagnóstico Diferencial
12.
Health Expect ; 27(1): e13978, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38366795

RESUMO

BACKGROUND: Care complexity can occur when patients experience health challenges simultaneously with social barriers including food and/or housing insecurity, lack of transportation or other factors that impact care and patient outcomes. People with rheumatoid arthritis (RA) may experience care complexity due to the chronicity of their condition and other biopsychosocial factors. There are few standardised instruments that measure care complexity and none that measure care complexity specifically in people with RA. OBJECTIVES: We assessed the content validity of the INTERMEDS Self-Assessment (IMSA) instrument that measures care complexity with a sample of adults with RA and rheumatology healthcare providers (HCPs). Cognitive debriefing interviews utilising a reparative framework were conducted. METHODS: Patient participants were recruited through two existing studies where participants agreed to be contacted about future studies. Study information was also shared through email blasts, posters and brochures at rheumatology clinic sites and trusted arthritis websites. Various rheumatology HCPs were recruited through email blasts, and divisional emails and announcements. Interviews were conducted with nine patients living with RA and five rheumatology HCPs. RESULTS: Three main reparative themes were identified: (1) Lack of item clarity and standardisation including problems with item phrasing, inconsistency of the items and/or answer sets and noninclusive language; (2) item barrelling, where items asked about more than one issue, but only allowed a single answer choice; and (3) timeframes presented in the item or answer choices were either too long or too short, and did not fit the lived experiences of patients. Items predicting future healthcare needs were difficult to answer due to the episodic and fluctuating nature of RA. CONCLUSIONS: Despite international use of the IMSA to measure care complexity, patients with RA and rheumatology HCPs in our setting perceived that it did not have content validity for use in RA and that revision for use in this population under a reparative framework was unfeasible. Future instrument development requires an iterative cognitive debriefing and repair process with the population of interest in the early stages to ensure content validity and comprehension. PATIENT OR PUBLIC CONTRIBUTION: Patient and public contributions included both patient partners on the study team and people with RA who participated in the study. Patient partners were involved in study design, analysis and interpretation of the findings and manuscript preparation. Data analysis was structured according to emergent themes of the data that were grounded in patient perspectives and experiences.


Assuntos
Artrite Reumatoide , Reumatologia , Adulto , Humanos , Autoavaliação (Psicologia) , Pessoal de Saúde , Artrite Reumatoide/psicologia
13.
BMC Med Educ ; 24(1): 83, 2024 Jan 23.
Artigo em Inglês | MEDLINE | ID: mdl-38263148

RESUMO

BACKGROUND: General pediatricians often initially address children's musculoskeletal (MSK) issues and play a crucial role in triaging and managing patients' rheumatologic conditions. This study assessed the effectiveness of a structured curriculum in enhancing pediatric residents' knowledge, MSK examination skills, and confidence during a 4-week pediatric rheumatology rotation. METHODS: Pediatric residents in their either second or third year who participated in the 4-week rheumatology rotation once across three academic years (July 2020-June 2023) were enrolled. Residents' knowledge, MSK examination skills, and confidence were assessed at pre- and post-rotation by using 25 multiple-choice questions, the Thai pediatric Gait Arms Legs Spine examination, and a questionnaire, respectively. The curriculum comprised instruction on MSK examinations, interactive lectures, case-based discussion, topic reviews, MSK radiology conference, clinical experience in rheumatology clinic and consultations, with self-guided learning with educational resources. RESULTS: Fifty-eight pediatric residents (48 females, 10 males) with a mean age of 28.9 ± 0.8 years participated. Significant improvements were noted postrotation. Knowledge scores rose from 63.0 ± 12.2 to 79.7 ± 9.1 (mean difference 16.7 ± 10.3, p < 0.001). Similarly, MSK examination scores increased from 67.5 ± 14.4 to 93.6 ± 8.7 (mean difference 26.1 ± 14.6, p < 0.001). Residents also reported a marked increase in confidence across all evaluated areas, including history taking, MSK examination, arthrocentesis, and diagnosing and treating rheumatologic conditions (p < 0.001). CONCLUSIONS: The 4-week structured curriculum in the pediatric rheumatology rotation significantly enhanced pediatric residents' knowledge, MSK examination skills, and confidence. These findings support the integration of pediatric rheumatology rotations into pediatric residency training programs.


Assuntos
Artrite Reumatoide , Reumatologia , Feminino , Masculino , Humanos , Criança , Adulto , Currículo , Aprendizagem , Pediatras
14.
Rheumatol Int ; 44(4): 663-673, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38289350

RESUMO

OBJECTIVE: Patients referred to rheumatologists are currently facing months of inefficient waiting time due to the increasing demand and rising workforce shortage. We piloted a pre-assessment of patients with suspected axial spondyloarthritis (axSpA) combining student-led clinics and telemedicine (symptom assessment, symptom monitoring and at-home capillary self-sampling) to improve access to rheumatology care. The aim of this study was to explore (1) current challenges accessing axSpA care and (2) patients' first-hand experiences. METHODS: Embedded within a clinical trial, this study was based on qualitative interviews with patients with suspected axSpA (n = 20). Data was analysed via qualitative content analysis. RESULTS: Student-led clinics were perceived as high-quality care, comparable to conventional rheumatologist-led visits. Patients expressed that their interactions with the students instilled a sense of trust. History-taking and examinations were perceived as comprehensive and meticulous. Telehealth tools were seen as empowering, offering immediate and continuous access to symptom assessment at home. Patients reported a lack of specificity of the electronic questionnaires, impeding accurate responses. Patients requested a comments area to supplement questionnaire responses. Some patients reported receiving help to complete the blood collection. CONCLUSION: Patients' access to rheumatology care is becoming increasingly burdensome. Pre-assessment including student-led clinics and telemedicine was highly accepted by patients. Patient interviews provided valuable in-depth feedback to improve the piloted patient pathway.


Assuntos
Espondiloartrite Axial , Reumatologia , Espondilartrite , Telemedicina , Humanos , Reumatologistas , Espondilartrite/diagnóstico , Estudantes , Pesquisa Qualitativa
15.
Arthritis Care Res (Hoboken) ; 76(2): 304-309, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37522281

RESUMO

OBJECTIVE: Transparency of disclosure in publication is necessary for readers to be aware of any potential conflicts of interest (PCOIs). Past studies of accuracy of disclosure in rheumatology journals have focused exclusively on clinical practice guidelines and not research works. We assessed discrepancy in reporting PCOIs in clinically oriented manuscripts published in the three top-ranked (by impact factor) US-based general rheumatology journals. METHODS: We reviewed disclosures provided by first, second, and last authors of 50 published clinically oriented articles in each of the three top-ranked general US rheumatology journals. For each author, we extracted payment reports from the Open Payments Database (OPD) related to consulting fees, honoraria, and speaker or faculty compensation. We defined a PCOI as a payment received from a company with an ongoing clinical trial or a medication on the market related to the manuscript's subject matter within the 36 months before the online publication date. We additionally analyzed each author individually to determine whether their reported disclosures matched PCOIs from the OPD. RESULTS: Of 150 articles analyzed, 101 included authors with PCOIs. Ninety-two of these 101 publications (92%) contained inaccurate (non- or under-) disclosures. Among 135 authors with PCOIs, 118 reported inaccurately (87%). All 14 articles that published clinical trial results (and all 23 of their qualifying authors) had disclosure inaccuracies. CONCLUSION: Inaccurate financial disclosure by authors remains an issue in clinically oriented research studies reported in top rheumatology journals. Improved community education and firmer expectations would permit readers to better assess any possible impact of PCOIs on publications.


Assuntos
Publicações Periódicas como Assunto , Reumatologia , Humanos , Revelação , Conflito de Interesses , Bases de Dados Factuais
17.
Arthritis Care Res (Hoboken) ; 76(1): 22-31, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37277949

RESUMO

Although the public health emergency associated with the COVID-19 pandemic has ended, challenges remain, especially for individuals with rheumatic diseases. We aimed to assess the historical and ongoing effects of COVID-19 on individuals with rheumatic diseases and rheumatology practices globally, with specific attention to vulnerable communities and lessons learned. We reviewed literature from several countries and regions, including Africa, Australia and New Zealand, China, Europe, Latin America, and the US. In this review, we summarize literature that not only examines the impact of the pandemic on individuals with rheumatic diseases, but also research that reports the lasting changes to rheumatology patient care and practice, and health service use. Across countries, challenges faced by individuals with rheumatic diseases during the pandemic included disruptions in health care and medication supply shortages. These challenges were associated with worse disease and mental health outcomes in some studies, particularly among those who had social vulnerabilities defined by socioeconomic, race, or rurality. Moreover, rheumatology practice was impacted in all regions, with the uptake of telemedicine and changes in health care utilization. While many regions developed rapid guidelines to disseminate scientific information, misinformation and disinformation remained widespread. Finally, vaccine uptake among individuals with rheumatic diseases has been uneven across the world. As the acute phase of the pandemic wanes, ongoing efforts are needed to improve health care access, stabilize rheumatology drug supplies, improve public health communication, and implement evidence-based vaccination practices to reduce COVID-19 morbidity and mortality among individuals with rheumatic diseases.


Assuntos
COVID-19 , Equidade em Saúde , Doenças Reumáticas , Reumatologia , Humanos , COVID-19/epidemiologia , Pandemias/prevenção & controle , SARS-CoV-2 , Doenças Reumáticas/diagnóstico , Doenças Reumáticas/epidemiologia , Doenças Reumáticas/terapia , Acessibilidade aos Serviços de Saúde
20.
Arthritis Care Res (Hoboken) ; 76(5): 600-607, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38108087

RESUMO

Starting in 2015, pediatric rheumatology fellowship training programs were required by the Accreditation Council for Graduate Medical Education to assess fellows' academic performance within 21 subcompetencies falling under six competency domains. Each subcompetency had four or five milestone levels describing developmental progression of knowledge and skill acquisition. Milestones were standardized across all pediatric subspecialties. As part of the Milestones 2.0 revision project, the Accreditation Council for Graduate Medical Education convened a workgroup in 2022 to write pediatric rheumatology-specific milestones. Using adult rheumatology's Milestones 2.0 as a starting point, the workgroup revised the patient care and medical knowledge subcompetencies and milestones to reflect requirements and nuances of pediatric rheumatology care. Milestones within four remaining competency domains (professionalism, interpersonal and communication skills, practice-based learning and improvement, and systems-based practice) were standardized across all pediatric subspecialties, and therefore not revised. The workgroup created a supplemental guide with explanations of the intent of each subcompetency, 25 in total, and examples for each milestone level. The new milestones are an important step forward for competency-based medical education in pediatric rheumatology. However, challenges remain. Milestone level assignment is meant to be informed by results of multiple assessment methods. The lack of pediatric rheumatology-specific assessment tools typically result in clinical competency committees determining trainee milestone levels without such collated results as the foundation of their assessments. Although further advances in pediatric rheumatology fellowship competency-based medical education are needed, Milestones 2.0 importantly establishes the first pediatric-specific rheumatology Milestones to assess fellow performance during training and help measure readiness for independent practice.


Assuntos
Competência Clínica , Educação de Pós-Graduação em Medicina , Bolsas de Estudo , Pediatria , Reumatologia , Reumatologia/educação , Reumatologia/normas , Humanos , Competência Clínica/normas , Educação de Pós-Graduação em Medicina/normas , Pediatria/educação , Pediatria/normas
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