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1.
RMD Open ; 10(3)2024 Jul 08.
Article in English | MEDLINE | ID: mdl-38977357

ABSTRACT

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.


Subject(s)
Rheumatology , Humans , Translational Research, Biomedical , Rheumatic Diseases/therapy
2.
Ann Rheum Dis ; 2024 May 08.
Article in English | MEDLINE | ID: mdl-38724076

ABSTRACT

BACKGROUND: Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and facilitators to PRP involvement in rheumatology research. METHODS: The SLR was conducted in PubMed/Medline for articles on PRP involvement in rheumatology research, published between 2017 and 2023; websites were also searched in rheumatology and other specialties. Data were extracted regarding the definition of PRPs, their role and added value, as well as barriers and facilitators to PRP involvement. The quality of the articles was assessed. Quantitative data were analysed descriptively, and principles of thematic content analysis was applied to qualitative data. RESULTS: Of 1016 publications, 53 articles were included; the majority of these studies were qualitative studies (26%), opinion articles (21%), meeting reports (17%) and mixed-methods studies (11%). Roles of PRPs ranged from research partners to patient advocates, advisors and patient reviewers. PRPs were reported/advised to be involved early in the project (32% of articles) and in all research phases (30%), from the conception stage to the implementation of research findings. The main barriers were challenges in communication and support for both PRPs and researchers. Facilitators of PRP involvement included more than one PRP per project, training of PRPs and researchers, a supportive environment for PRPs (including adequate communication, acknowledgement and compensation of PRPs) and the presence of a PRP coordinator. CONCLUSION: This SLR identified barriers and facilitators to PRP involvement, and was key to updating the European Alliance of Associations for Rheumatology recommendations for PRP-researcher collaboration based on scientific evidence.

3.
RMD Open ; 10(2)2024 Apr 05.
Article in English | MEDLINE | ID: mdl-38580342

ABSTRACT

AIM: We aimed to explore a new and readily available practical marker for rapidly progressive interstitial lung disease (RP-ILD) and poor short-term outcomes in patients with idiopathic inflammatory myopathies (IIM). METHODS: A total of 1822 consecutive patients with IIM between 2009 and 2021 were evaluated retrospectively. All proven cases of naïve ILD with complete medical records were included. Red cell distribution width (RDW) values at the initial stage, 3 months and last follow-up were collected. The clinical characteristics and outcomes of the patients were recorded. RESULTS: We identified 532 patients with IIM with an average follow-up of 4 years. ILD prevalence was higher in patients of elevated RDW (p<0.001). The patients with ILD and elevated RDW had lower levels of PaO2/FiO2, FVC% and DLco% and a higher prevalence of RP-ILD than those with normal RDW (p<0.001). Prognostic analysis revealed that RDW was an independent risk factor for prognosis in patients with IIM-ILD (HR=2.9, p=0.03). Patients with dermatomyositis (DM) with RP-ILD with a change in RDW within 3 months (∆RDW-3) greater than 0 were more likely to die within 3 months. Moreover, the prevalence of ∆RDW-3>0 was higher in patients with RP-ILD and positive for anti-melanoma differentiation-associated gene 5 antibody who died within 3 months (87.5%) compared with those alive at 3 months (24.6%) (p<0.001). CONCLUSION: These findings suggest that repeated RDW assays could assist physicians in identifying patients with DM-ILD who were at a high risk of RP-ILD and death.


Subject(s)
Dermatomyositis , Lung Diseases, Interstitial , Myositis , Humans , Dermatomyositis/complications , Dermatomyositis/diagnosis , Dermatomyositis/epidemiology , Retrospective Studies , Erythrocyte Indices , Lung Diseases, Interstitial/diagnosis , Lung Diseases, Interstitial/epidemiology , Lung Diseases, Interstitial/etiology , Myositis/complications
4.
Vive (El Alto) ; 7(19): 183-193, abr. 2024.
Article in Spanish | LILACS | ID: biblio-1560630

ABSTRACT

La implementación del Presupuesto por Resultados (PpR) requiere elementos como información oportuna, sistemas de monitoreo, incentivos y procedimientos normados. En el caso de Perú, su enfoque de PpR ha generado cambios significativos en resultados de salud, especialmente en programas como desnutrición y salud materna y neonatal, al priorizar actividades demostradas como más costo-eficaces a nivel mundial. Objetivo. Determinar la relación entre el presupuesto por resultados (PpR) y la Calidad del gasto del programa de cáncer en un hospital público del Ministerio de Salud, 2021. Materiales y Métodos. Se realizó un estudio de enfoque cuantitativo, tipo básico, diseño no experimental, descriptivo y nivel correlacional. La población fue de 131 trabajadores vinculados al ciclo del presupuesto, de los cuales se seleccionó una muestra de 32 trabajadores responsables directos del PpR. Se utilizó la técnica de encuesta y dos cuestionarios como instrumentos, sometidos a los coeficientes KR-20 y Alpha de Cronbach para evaluar la confiabilidad. Resultados. El coeficiente de Spearman fue de 0.387, indicando una relación positiva y media entre las variables. La significancia fue de 0.029 (< 0.05). Conclusiones. Se encontró una relación significativa entre el PpR y la Calidad del gasto del programa de Cáncer en el hospital del Ministerio de Salud, confirmando que un mejor manejo del PpR está asociado a una mejor calidad de gasto.


The implementation of results-based budgeting (RBB) requires elements such as timely information, monitoring systems, incentives and standardized procedures. In the case of Peru, its PfR approach has generated significant changes in health outcomes, especially in programs such as malnutrition and maternal and neonatal health, by prioritizing activities proven to be more cost-effective worldwide. Objective. To determine the relationship between the budget for results (BfR) and the Quality of cancer program spending in a public hospital of the Ministry of Health, 2021. Materials and Methods. A quantitative approach, basic type, non-experimental, descriptive and correlational study was carried out. The population was 131 workers linked to the budget cycle, from which a sample of 32 workers directly responsible for the PpR was selected. The survey technique and two questionnaires were used as instruments, subjected to Cronbach's KR-20 and Alpha coefficients to assess reliability. Results. Spearman's coefficient was 0.387, indicating a positive and average relationship between the variables. Significance was 0.029 (< 0.05). Conclusions. A significant relationship was found between PpR and Quality of expenditure of the Cancer program in the Ministry of Health hospital, confirming that better management of PpR is associated with better quality of expenditure.


A implementação do orçamento por desempenho (PfR) requer elementos como informações oportunas, sistemas de monitoramento, incentivos e procedimentos padronizados. No caso do Peru, sua abordagem de PfR gerou mudanças significativas nos resultados de saúde, especialmente em programas como desnutrição e saúde materna e neonatal, priorizando atividades comprovadamente mais econômicas em todo o mundo. Objetivo. Determinar a relação entre o orçamento por resultados (BfR) e a qualidade dos gastos com o programa de câncer em um hospital público do Ministério da Saúde, 2021. Materiais e métodos. Foi realizado um estudo de abordagem quantitativa, do tipo básico, não experimental, descritivo e correlacional. A população foi de 131 trabalhadores ligados ao ciclo orçamentário, dos quais foi selecionada uma amostra de 32 trabalhadores diretamente responsáveis pelo BfR. Como instrumentos, foram utilizados a técnica de survey e dois questionários, submetidos aos coeficientes KR-20 e Alfa de Cronbach para avaliar a confiabilidade. Resultados. O coeficiente de Spearman foi de 0,387, indicando uma relação positiva e média entre as variáveis. A significância foi de 0,029 (< 0,05). Conclusões. Foi encontrada uma relação significativa entre o PfR e a qualidade das despesas do programa de câncer no hospital do Ministério da Saúde, confirmando que uma melhor gestão do PfR está associada a uma melhor qualidade das despesas.


Subject(s)
Health Expenditures
6.
RMD Open ; 10(1)2024 Feb 23.
Article in English | MEDLINE | ID: mdl-38395453

ABSTRACT

Relapses and late complications remain a concern in giant cell arteritis (GCA). Monitoring strategies are required to effectively tailor treatment and improve patients' outcomes. Current monitoring of GCA is based on clinical assessment and evaluation of traditional inflammatory markers such as C reactive protein and erythrocyte sedimentation rate; however, this approach has limited value in patients receiving interleukin (IL)-6 blocking agents. New blood biomarkers that are less dependent on the IL-6 axis such as IL-23, B cell activating factor, osteopontin and calprotectin have been explored, but none of them has yet accumulated sufficient evidence to qualify as a routine follow-up parameter. Imaging techniques, including ultrasound and 18F-fluorodeoxyglucose positron emission tomography/computed tomography, potentially offer additional insights; however, the choice of the imaging method as well as its interpretation must be investigated further. Future studies are required to investigate the outcome of patients with GCA whose treatment decisions are based on traditional plus novel (laboratory and imaging) biomarkers as compared with those undergoing conventional monitoring strategies.


Subject(s)
Giant Cell Arteritis , Humans , Giant Cell Arteritis/diagnostic imaging , Giant Cell Arteritis/complications , Diagnostic Imaging , Positron Emission Tomography Computed Tomography , Glucocorticoids/therapeutic use , Biomarkers , Interleukin-6
7.
Healthcare (Basel) ; 12(3)2024 Jan 30.
Article in English | MEDLINE | ID: mdl-38338235

ABSTRACT

The development of collaborative nurse prescribing (NP) in Andalusia (Spain) in 2018 gives us the opportunity to measure the impact of this practice. Scientific evidence indicates that prescribing is not more costly when performed by nurses and, in fact, is more economical in some cases. The aim of this study is to determine the effects of NP on the effectiveness, health outcomes and adverse events related to prescribing including in the follow-up of patients treated with antivitamin K oral anticoagulants in primary care (PC) by nurses. The design is a randomized clinical trial. The population comprises 1208 anticoagulated patients in 2019. The sample size calculation considers an alpha error of 0.05, a power of 99% and an effect size of 0.5, resulting in 127 users per group. Therefore, a total sample of 254 participants is needed. However, as the project intends to treat patients it will include the universal sample that meets the criteria in the two health centers participating in the study, with 575 participants in total. Data collection was carried out in the PC District of the Alamillo-San Jerónimo Clinical Management Unit of Sevilla for one year from January 2020. Data analysis is performed using the SPSS Statistics 25 package. We intend to study if nurse collaborative prescription in the follow-up and management of patients taking antivitamin K oral anticoagulants in PC is as effective as the traditional approach to follow-ups carried out by a family physician.

8.
RMD Open ; 10(1)2024 02 13.
Article in English | MEDLINE | ID: mdl-38351052

ABSTRACT

BACKGROUND: The Spondyloarthritis Research Consortium of Canada (SPARCC) developers have created web-based calibration modules for the SPARCC MRI sacroiliac joint (SIJ) scoring methods. We aimed to test the impact of applying these e-modules on the feasibility and reliability of these methods. METHODS: The SPARCC-SIJ RETIC e-modules contain cases with baseline and follow-up scans and an online scoring interface. Visual real-time feedback regarding concordance/discordance of scoring with expert readers is provided by a colour-coding scheme. Reliability is assessed in real time by intraclass correlation coefficient (ICC), cases being scored until ICC targets are attained. Participating readers (n=17) from the EuroSpA Imaging project were randomised to one of two reader calibration strategies that each comprised three stages. Baseline and follow-up scans from 25 cases were scored after each stage was completed. Reliability was compared with a SPARCC developer, and the System Usability Scale (SUS) assessed feasibility. RESULTS: The reliability of readers for scoring bone marrow oedema was high after the first stage of calibration, and only minor improvement was noted following the use of the inflammation module. Greater enhancement of reader reliability was evident after the use of the structural module and was most consistently evident for the scoring of erosion (ICC status/change: stage 1 (0.42/0.20) to stage 3 (0.50/0.38)) and backfill (ICC status/change: stage 1 (0.51/0.19) to stage 3 (0.69/0.41)). The feasibility of both e-modules was evident by high SUS scores. CONCLUSION: The SPARCC-SIJ RETIC e-modules are feasible, effective knowledge transfer tools, and their use is recommended before using the SPARCC methods for clinical research and tria.


Subject(s)
Sacroiliac Joint , Spondylarthritis , Humans , Canada , Magnetic Resonance Imaging/methods , Reproducibility of Results , Sacroiliac Joint/diagnostic imaging , Sacroiliac Joint/pathology , Spondylarthritis/diagnosis , Spondylarthritis/pathology
9.
Ann Rheum Dis ; 83(5): 589-598, 2024 Apr 11.
Article in English | MEDLINE | ID: mdl-38233104

ABSTRACT

OBJECTIVES: To investigate the prevalence of axial spondyloarthritis (axSpA) in patients with chronic back pain (CBP) of less than 2 years (2y) duration referred to the rheumatologist, the development of diagnosis over time, and patient characteristics of those developing definite (d-)axSpA over 2y. METHODS: We analysed the 2y data from SPondyloArthritis Caught Early, a European cohort of patients (<45 years) with CBP (≥3 months, ≤2y) of unknown origin. The diagnostic workup comprised evaluation of clinical SpA features, acute phase reactants, HLA-B27, radiographs and MRI (sacroiliac joints and spine), with repeated assessments. At each visit (baseline, 3 months, 1y and 2y), rheumatologists reported a diagnosis of axSpA or non-axSpA with level of confidence (LoC; 0-not confident at all to 10-very confident). MAIN OUTCOME: axSpA diagnosis with LoC≥7 (d-axSpA) at 2y. RESULTS: In 552 patients with CBP, d-axSpA was diagnosed in 175 (32%) at baseline and 165 (30%) at 2y. Baseline diagnosis remained rather stable: at 2y, baseline d-axSpA was revised in 5% of patients, while 8% 'gained' d-axSpA. Diagnostic uncertainty persisted in 30%. HLA-B27+ and baseline sacroiliitis imaging discriminated best 2y-d-axSpA versus 2y-d-non-axSpA patients. Good response to non-steroidal anti-inflammatory drugs and MRI-sacroiliitis most frequently developed over follow-up in patients with a new d-axSpA diagnosis. Of the patients who developed MRI-sacroiliitis, 7/8 were HLA-B27+ and 5/8 male. CONCLUSION: A diagnosis of d-axSpA can be reliably made in nearly one-third of patients with CBP referred to the rheumatologist, but diagnostic uncertainty may persist in 5%-30% after 2y. Repeated assessments yield is modest, but repeating MRI may be worthwhile in male HLA-B27+ patients.


Subject(s)
Axial Spondyloarthritis , Sacroiliitis , Spondylarthritis , Spondylitis, Ankylosing , Humans , Male , Rheumatologists , Sacroiliitis/diagnostic imaging , HLA-B27 Antigen , Spondylarthritis/diagnosis , Spondylarthritis/diagnostic imaging , Back Pain/diagnosis , Magnetic Resonance Imaging/methods , Spondylitis, Ankylosing/diagnosis
10.
Ann Rheum Dis ; 83(1): 48-57, 2024 Jan 02.
Article in English | MEDLINE | ID: mdl-36828585

ABSTRACT

OBJECTIVES: To develop treat-to-target (T2T) recommendations in giant cell arteritis (GCA) and polymyalgia rheumatica (PMR). METHODS: A systematic literature review was conducted to retrieve data on treatment targets and outcomes in GCA/PMR as well as to identify the evidence for the effectiveness of a T2T-based management approach in these diseases. Based on evidence and expert opinion, the task force (29 participants from 10 countries consisting of physicians, a healthcare professional and a patient) developed recommendations, with consensus obtained through voting. The final level of agreement was provided anonymously. RESULTS: Five overarching principles and six-specific recommendations were formulated. Management of GCA and PMR should be based on shared decisions between patient and physician recognising the need for urgent treatment of GCA to avoid ischaemic complications, and it should aim at maximising health-related quality of life in both diseases. The treatment targets are achievement and maintenance of remission, as well as prevention of tissue ischaemia and vascular damage. Comorbidities need to be considered when assessing disease activity and selecting treatment. CONCLUSION: These are the first T2T recommendations for GCA and PMR. Treatment targets, as well as strategies to assess, achieve and maintain these targets have been defined. The research agenda highlights the gaps in evidence and the need for future research.


Subject(s)
Giant Cell Arteritis , Polymyalgia Rheumatica , Humans , Giant Cell Arteritis/complications , Polymyalgia Rheumatica/epidemiology , Quality of Life , Comorbidity
11.
Ann Rheum Dis ; 83(2): 169-176, 2024 Jan 11.
Article in English | MEDLINE | ID: mdl-37890977

ABSTRACT

OBJECTIVE: To develop and validate definitions for disease flares in rheumatoid arthritis (RA) based on the quantitative Simplified and Clinical Disease Activity Indices (SDAI, CDAI). METHODS: We analysed RA treatment courses from the Norwegian disease-modifying antirheumatic drug registry (NOR-DMARD) and the Vienna RA cohort. In a receiver operating curve analysis, we determined flare definitions for absolute changes in SDAI and CDAI based on a semiquantitative patient anchor. NOR-DMARD was sampled into an 80%-training cohort for cut point derivation and a 20%-test cohort for internal validation. The definitions were then externally validated in the independent Vienna RA cohort and tested regarding their performance on longitudinal, content, face, and construct validity. RESULTS: We analysed 4256 treatment courses from NOR-DMARD and 2557 from the Vienna RA cohort. The preliminary definitions for absolute changes in SDAI and CDAI for flare are an increase of 4.7 and 4.5, respectively. The definitions performed well in the test and external validation cohorts, and showed clinical face and construct validity, as flares significantly impact both functional ( ∆ Health Assessment Questionnaire flare vs no-flare +0.43; p<0.001) and structural ( ∆ modified Sharp Score 43% higher after flare; p<0.001) disease outcomes, and reflect consistent worsening across all disease core sets, both patient reported and objective. CONCLUSION: We here provide novel definitions for flare in RA based on SDAI and CDAI, validated in two large independent real-world cohorts. In times of highly effective medications for RA, and consideration of their tapering, these definitions will be useful for guiding decision making in clinical practice and designing clinical trials.


Subject(s)
Antirheumatic Agents , Arthritis, Rheumatoid , Humans , Severity of Illness Index , Arthritis, Rheumatoid/diagnosis , Arthritis, Rheumatoid/drug therapy , Antirheumatic Agents/therapeutic use , Norway , Remission Induction
12.
Rev. saúde pública (Online) ; 58: 17, 2024. tab, graf
Article in English | LILACS-Express | LILACS, BBO - Dentistry | ID: biblio-1560452

ABSTRACT

ABSTRACT OBJECTIVE This study aims to integrate the concepts of planetary health and big data into the Donabedian model to evaluate the Brazilian dengue control program in the state of São Paulo. METHODS Data science methods were used to integrate and analyze dengue-related data, adding context to the structure and outcome components of the Donabedian model. This data, considering the period from 2010 to 2019, was collected from sources such as Department of Informatics of the Unified Health System (DATASUS), the Brazilian Institute of Geography and Statistics (IBGE), WorldClim, and MapBiomas. These data were integrated into a Data Warehouse. K-means algorithm was used to identify groups with similar contexts. Then, statistical analyses and spatial visualizations of the groups were performed, considering socioeconomic and demographic variables, soil, health structure, and dengue cases. OUTCOMES Using climate variables, the K-means algorithm identified four groups of municipalities with similar characteristics. The comparison of their indicators revealed certain patterns in the municipalities with the worst performance in terms of dengue case outcomes. Although presenting better economic conditions, these municipalities held a lower average number of community healthcare agents and basic health units per inhabitant. Thus, economic conditions did not reflect better health structure among the three studied indicators. Another characteristic of these municipalities is urbanization. The worst performing municipalities presented a higher rate of urban population and human activity related to urbanization. CONCLUSIONS This methodology identified important deficiencies in the implementation of the dengue control program in the state of São Paulo. The integration of several databases and the use of Data Science methods allowed the evaluation of the program on a large scale, considering the context in which activities are conducted. These data can be used by the public administration to plan actions and invest according to the deficiencies of each location.


RESUMO OBJETIVO Integrar os conceitos de Saúde Planetária e Big Data ao modelo de Donabedian, para avaliar o Programa de Combate à Dengue no estado de São Paulo. MÉTODOS Foram adotados métodos de Ciência de Dados para integração e análise de dados relacionados à dengue, agregando o contexto aos componentes de estrutura e de resultado do modelo de Donabedian. Esses dados, considerando o período de 2010 a 2019, foram coletados de fontes como Datasus, Instituto Brasileiro de Geografia e Estatística (IBGE), WorldClim e MapBiomas, e integrados em um Data Warehouse. Para a identificação de grupos com contextos similares, foi utilizado o algoritmo K-means. Em seguida, foram realizadas análises estatísticas e visualizações espaciais dos grupos, considerando variáveis socioeconômicas, demográficas, solo, estrutura de saúde e casos de dengue. RESULTADOS Com o uso das variáveis climáticas, o algoritmo K-means identificou quatro grupos de municípios com características similares. A comparação dos seus indicadores revelou certos padrões nos municípios com pior desempenho quanto aos resultados de casos de dengue. Embora tivessem melhores condições econômicas, eles tinham menor número médio de agentes comunitários e de unidades básicas de saúde por habitante. Dessa forma, as condições econômicas não refletiram em melhor estrutura de saúde nos três indicadores avaliados. Outra característica desses municípios é a urbanização. Os municípios de pior desempenho tinham maior taxa de população urbana e de modificações antrópicas relacionadas à urbanização. CONCLUSÕES Por meio desta metodologia, foi possível identificar importantes deficiências nas condições para a execução do programa de combate à dengue no estado de São Paulo. A integração de diversas bases de dados e a utilização de métodos de Ciência de Dados permitiram a avaliação do programa em larga escala, considerando o contexto em que as ações são executadas. Dessa forma, a gestão pública pode utilizar as informações coletadas para planejar ações e investir de acordo com as deficiências de cada local.

13.
RMD Open ; 9(4)2023 11.
Article in English | MEDLINE | ID: mdl-37914180

ABSTRACT

OBJECTIVES: The objective of this study is to evaluate whether there are differences in the long-term prognosis across various phenotypes of early arthritis (EA). METHODS: Three EA cohorts (Reade, Etude et Suivi des Polyarthrites Indifférenciées Récentes (ESPOIR) and Early Arthritis Clinic (EAC)) were analysed. Clinical data were collected up to 24 years. Hands and feet radiographs were scored according to the Sharp van der Heijde (SvdH) method. Latent class analysis was applied to determine the EA phenotypes at baseline. Each class received a label reflecting its most prominent features. Prognostic outcomes included Health Assessment Questionnaire (HAQ), Short Form 36 (SF36) and SvdH score. The association between class membership and outcomes over time was tested in multivariable models. RESULTS: In total, 390 (Reade), 798 (ESPOIR) and 3991 (EAC) patients were analysed separately. Two classes with symmetrical polyarthritis emerged; one of these labelled as autoimmune inflammatory polyarthritis (AIPA), had high likelihood of acute phase reactants (APR) elevation and autoantibody positivity, while the other (mild-inflammatory polyarthritis; MIPA) had not. A third class had oligoarthritis of upper limbs (OAUL) and could be subdivided into autoimmune OAUL and mild-inflammatory OAUL. A fifth class had oligoarthritis of lower limbs. The SvdH scores were worse in patients with APR/autoantibodies (AIPA) than in those without (MIPA). No clinically meaningful differences across classes in HAQ or SF36 over time were found. CONCLUSION: Radiographic progression over time primarily occurs in EA patients with APR/autoantibodies. The absence of these markers, however, does not necessarily translate into better long-term function and quality of life. Clinicians should not only aim at preventing joint damage, but look beyond structural progression in order to further improve the lives of people with EA.


Subject(s)
Arthritis, Rheumatoid , Humans , Quality of Life , Disease Progression , Prognosis , Autoantibodies , Phenotype
14.
RMD Open ; 9(4)2023 11 23.
Article in English | MEDLINE | ID: mdl-37996123

ABSTRACT

OBJECTIVE: The inclusion of patient research partners (PRPs) in research projects is increasingly recognised and recommended in rheumatology. The level of involvement of PRPs in translational research in rheumatology remains unknown, while in randomised clinical trials (RCTs), it has been reported to be 2% in 2020. Therefore, we aimed to assess the involvement of PRPs in recent translational studies and RCTs in rheumatology. METHODS: We conducted a scoping literature review of the 80 most recent articles (40 translational studies and 40 RCTs) from four target diseases: rheumatoid arthritis, psoriatic arthritis, systemic lupus erythematosus and lower extremity osteoarthritis. We selected 20 papers from each disease, published up until 1 March 2023, in rheumatology and general scientific journals. In each paper, the extent of PRP involvement was assessed. Analyses were descriptive. RESULTS: Of 40 translational studies, none reported PRP involvement. Of 40 RCTs, eight studies (20%) reported PRP involvement. These trials were mainly from Europe (75%) and North America (25%). Most of them (75%) were non-industry funded. The type of PRP involvement was reported in six of eight studies: six studies reported PRP participation in the study design or design of the intervention and two of them in the interpretation of the results. All the trials reporting the number of PRPs (75%), involved at least two PRPs. CONCLUSION: Despite a worldwide movement advocating for increased patient involvement in research, PRPs in translational research and RCTs in rheumatology are significantly under-represented. This limited involvement of PRPs in research highlights a persistent gap between the existing recommendations and actual practice.


Subject(s)
Arthritis, Psoriatic , Arthritis, Rheumatoid , Lupus Erythematosus, Systemic , Rheumatology , Humans , Patient Participation
15.
RMD Open ; 9(4)2023 11 23.
Article in English | MEDLINE | ID: mdl-37996124

ABSTRACT

OBJECTIVE: To determine the validity of a hardness sensor to objectively assess skin induration in patients with systemic sclerosis, and to compare the hardness sensor with the modified Rodnan skin score (MRSS) and a durometer. METHODS: The skin induration was measured in two assessments: a Latin square experiment to examine the hardness sensor's intraobserver and interobserver reliability; and a longitudinal cohort to evaluate the distribution of hardness sensor measurements, the correlation between hardness sensor, durometer and MRSS, and the sensitivity to change in skin hardness. Other outcome data collected included the health assessment questionnaire (HAQ) disability index and Keitel function test (KTF) score. RESULTS: The reliability of the hardness sensor was excellent, with high intraobserver and interobserver intraclass correlation coefficients (0.97; 0.96), which was higher than MRSS (0.86; 0.74). Interobserver reproducibility of hardness sensor was only poor in abdomen (0.38), yet for durometer it was poor in face (0.11) and abdomen (0.33). The hardness sensor score provided a greater dynamic evaluation range than MRSS. Total hardness sensor score correlated well with MRSS (r=0.90, p<0.001), total durometer score (r=0.95, p<0.001), HAQ disability index (r=0.70, p<0.001) and KTF score (r=0.66, p<0.001). Change in hardness sensor score also correlated with change in MRSS (r=0.78, p<0.001), total durometer score (r=0.85, p<0.001), HAQ disability index (r=0.76, p<0.001) and KTF score (r=0.67, p<0.001). CONCLUSION: The hardness sensor showed greater reproducibility and accuracy than MRSS, and more application sites than durometer; it can also reflect patients' self-assessments and function test outcomes.


Subject(s)
Scleroderma, Systemic , Skin Diseases , Humans , Reproducibility of Results , Hardness , Scleroderma, Systemic/diagnosis , Skin
16.
Front Psychol ; 14: 1178341, 2023.
Article in English | MEDLINE | ID: mdl-37484089

ABSTRACT

Introduction: Reliable and valid instruments are needed to measure the impact of mental health services and programs on the journeys of recovery of service users. The aim of this study was to explore the psychometric properties of the cross-culturally adapted 15-item Questionnaire about the Process of Recovery in Spain (QPR-15-SP). Methods: One hundred and ten participants from three locations in Spain (Málaga, Barcelona and Madrid), who were users of primary and specialized mental health services, were interviewed from October 2021 to June 2022. Results: The internal consistency obtained was excellent: ω =.93 and α =.92. Temporal reliability using intraclass correlation coefficients was moderate (ICC=.684, p <.000). Regarding convergent validity, the QPR-15-SP had a moderate correlation with the Clinical Outcomes in Routine Evaluation-Outcome Measure (CORE-OM) (ρ =-.500, p <.000), a Visual Numeric Recovery Scale (VNRS) (ρ =.591, p <.000), and the Stages of Recovery Instrument (STORI) (r =.566, p <.000). Correlations between advanced stages of recovery and higher QPR-15-SP scores were found (Moratorium: ρ =-.579, p <.000; Awareness: ρ =-.130, p =.189; Preparation: r =-.043, P=.665; Rebuilding: r =.460, p <.000; Growth: ρ =.697, p <.000). In terms of divergent validity, the QPR-15-SP had low correlation with the DUKE-UNC Functional Social Support Scale (ρ =.273, p <.005). The confirmatory factor analysis of the 1-factor structure obtained reasonable goodness of fit indexes. Discussion: The QPR-15-SP has acceptable psychometric properties, providing support for measuring recovery in Spain and allowing international comparison research.

17.
BMJ Health Care Inform ; 30(1)2023 Jul.
Article in English | MEDLINE | ID: mdl-37451691

ABSTRACT

BACKGROUND AND OBJECTIVES: Turnover time (TOT), defined as the time between surgical cases in the same operating room (OR), is often perceived to be lengthy without clear cause. With the aim of optimising and standardising OR turnover processes and decreasing TOT, we developed an innovative and staff-interactive TOT measurement method. METHODS: We divided TOT into task-based segments and created buttons on the electronic health record (EHR) default prelogin screen for appropriate staff workflows to collect more granular data. We created submeasures, including 'clean-up start', 'clean-up complete', 'set-up start' and 'room ready for patient', to calculate environmental services (EVS) response time, EVS cleaning time, room set-up response time, room set-up time and time to room accordingly. RESULTS: Since developing and implementing these workflows, measures have demonstrated excellent staff adoption. Median times of EVS response and cleaning have decreased significantly at our main hospital ORs and ambulatory surgery centre. CONCLUSION: OR delays are costly to hospital systems. TOT, in particular, has been recognised as a potential dissatisfier and cause of delay in the perioperative environment. Viewing TOT as one finite entity and not a series of necessary tasks by a variety of team members limits the possibility of critical assessment and improvement. By dividing the measurement of TOT into respective segments necessary to transition the room at the completion of one case to the onset of another, valuable insight was gained into the causes associated with turnover delays, which increased awareness and improved accountability of staff members to complete assigned tasks efficiently.


Subject(s)
Operating Rooms , Humans , Time Factors
18.
Ann Rheum Dis ; 82(8): 1107-1113, 2023 08.
Article in English | MEDLINE | ID: mdl-37188497

ABSTRACT

BACKGROUND: Postgraduate rheumatology training programmes are already established at a national level in most European countries. However, previous work has highlighted a substantial level of heterogeneity in the organisation and, in part, content of programmes. OBJECTIVE: To define competences and standards of knowledge, skills and professional behaviours required for the training of rheumatologists. METHODS: A European Alliance of Associations for Rheumatology (EULAR) task force (TF) of 23 experts, including two members of the European Union of Medical Specialists (UEMS) section of rheumatology, was convened. The mapping phase consisted of the retrieval of key documents on specialty training in rheumatology and other related specialties across a broad set of international sources. The content of these documents was extracted and represented the foundation for the document draft that underwent several rounds of online discussion within the TF, and afterwards was also distributed to a broad group of stakeholders for collecting feedback. The list of generated competences was voted on during the TF meetings, while the level of agreement (LoA) with each statement was established by anonymous online voting. RESULTS: A total of 132 international training curricula were retrieved and extracted. In addition to the TF members, 253 stakeholders commented and voted on the competences through an online anonymous survey. The TF developed (1) an overarching framework indicating the areas that should be addressed during training, (2) 7 domains defining broad areas that rheumatology trainees should master by the end of the training programme, (3) 8 core themes defining the nuances of each domain and (4) 28 competences that trainees should acquire to cover each of the areas outlined in the overarching framework. A high LoA was achieved for all competences. CONCLUSION: These points to consider for EULAR-UEMS standards for the training of European rheumatologists are now defined. Their dissemination and use can hopefully contribute to harmonising training across European countries.


Subject(s)
Rheumatology , Humans , Rheumatologists , Curriculum , Surveys and Questionnaires , Europe
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