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BACKGROUND: The peripheral microangiopathy may be well evaluated and studied by nailfold capillaroscopy (NFC) which is a safe and non-invasive technique. NFC has been reported to have both diagnostic and prognostic values in patients presenting with Raynaud's phenomenon. OBJECTIVE: The overarching objective of this work was to make a consensus on what domains should be included in a capillaroscopy report and that it can be used in daily clinical practice and clinical research in the area of rheumatology. METHODS: A Delphi questionnaire was developed regarding capillaroscopy report from a literature review and expert consensus. The first Delphi round included 14 core areas, its 18 domains with 50 subdomains, derived from a systematic literature review. The level of evidence was determined for each core set using the Oxford Centre for Evidence-based Medicine (CEBM) system. Nine response categories have been set per each item ranging between 1 and 9. Round 2, aimed to reach preliminary consensus "in" or "out" for domains. It included all items that were rated "critical" by at least 80% of the participants as well as any new domains proposed in round 1. RESULTS: The participants to the first, and second round were 11 experts. Fourteen domains were discussed in the two rounds. At the end of the survey, the final report template of NFC in rheumatology reached a consensus. CONCLUSION: A nailfold capillaroscopy report template has been developed by this study, based on outcomes of a Delphi process, by international participants panel. All domains met the 80% voting threshold set in this work. The reporting template can be used for both clinical research as well as day to day practice to provide guidance and standardize the NFC reporting.
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Técnica Delphi , Angioscopia Microscópica , Humanos , Consenso , Doença de Raynaud/diagnóstico , Unhas/irrigação sanguínea , Unhas/diagnóstico por imagemRESUMO
OBJECTIVE: Our objective was to develop and validate cutoff values in the systemic Juvenile Arthritis Disease Activity Score 10 (sJADAS10) that distinguish the states of inactive disease (ID), minimal disease activity (MDA), moderate disease activity (MoDA), and high disease activity (HDA) in children with systemic juvenile idiopathic arthritis, based on subjective disease state assessment by the treating pediatric rheumatologist. METHODS: The cutoff definition cohort was composed of 400 patients enrolled at 30 pediatric rheumatology centers in 11 countries. Using the subjective physician rating as an external criterion, six methods were applied to identify the cutoffs: mapping, calculation of percentiles of cumulative score distribution, the Youden index, 90% specificity, maximum agreement, and receiver operating characteristic curve analysis. Sixty percent of the patients were assigned to the definition cohort, and 40% were assigned to the validation cohort. Cutoff validation was conducted by assessing discriminative ability. RESULTS: The sJADAS10 cutoffs that separated ID from MDA, MDA from MoDA, and MoDA from HDA were ≤2.9, ≤10, and >20.6, respectively. The cutoffs discriminated strongly among different levels of pain, between patients with and without morning stiffness, and among patients whose parents judged their disease status as remission or persistent activity or flare or were satisfied or not satisfied with current illness outcome. CONCLUSION: The sJADAS cutoffs revealed good metrologic properties in both definition and validation cohorts and are therefore suitable for use in clinical trials and routine practice.
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Artrite Juvenil , Índice de Gravidade de Doença , Humanos , Artrite Juvenil/fisiopatologia , Criança , Masculino , Feminino , Adolescente , Pré-Escolar , Estudos de Coortes , Curva ROCRESUMO
OBJECTIVE: To gain consensus on the definitions and descriptions of the domains of the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials evaluating shared decision making (SDM) interventions. METHODS: Following the OMERACT Handbook methods, our Working Group (WG), comprised of 90 members, including 17 patient research partners (PRPs) and 73 clinicians and researchers, had six virtual meetings in addition to email exchanges to develop draft definitions and descriptions. The WG then conducted an international survey of its members to gain consensus on the definitions and descriptions. Finally, the WG members had virtual meetings and e-mail exchanges to review survey results and finalize names, definitions and descriptions of the domains. RESULTS: WG members contributed to developing the definitions. Fifty-two members representing four continents and 13 countries completed the survey, including 15 PRPs, 33 clinicians and 37 researchers. PRPs and clinicians/researchers agreed with all definitions and descriptions with agreements ranging from 87% to 100%. Respondents suggested wording changes to the names, definitions and descriptions to better reflect the domains. Discussions led to further simplification and clarification to address common questions/concerns about the domains. CONCLUSION: Our WG reached consensus on the definitions and descriptions of the domains of the core domain set for rheumatology trials of SDM interventions. This step is crucial to understand each domain and provides the foundation to identify instruments to measure each domain for inclusion in the Core Outcome Measurement Set. CLINICAL SIGNIFICANCE: The current study provides consensus-based definitions and descriptions for the domains of the OMERACT core domain set for shared decision making interventions from patients/caregivers, clinicians and researchers. This is a crucial step to understand each domain and provides the foundation to identify instruments to measure each domain for inclusion in the Core Outcome Measurement Set for trials of SDM interventions.
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Reumatologia , Humanos , Consenso , Tomada de Decisão Compartilhada , Avaliação de Resultados em Cuidados de SaúdeRESUMO
OBJECTIVES: Shared decision making (SDM) is a central tenet in rheumatic and musculoskeletal care. The lack of standardization regarding SDM instruments and outcomes in clinical trials threatens the comparative effectiveness of interventions. The Outcome Measures in Rheumatology (OMERACT) SDM Working Group is developing a Core Outcome Set for trials of SDM interventions in rheumatology and musculoskeletal health. The working group reached consensus on a Core Outcome Domain Set in 2020. The next step is to develop a Core Outcome Measurement Set through the OMERACT Filter 2.2. METHODS: We conducted a scoping review (PRISMA-ScR) to identify candidate instruments for the OMERACT Filter 2.2 We systematically reviewed five databases (Ovid MEDLINE®, Embase, Cochrane Library, CINAHL and Web of Science). An information specialist designed search strategies to identify all measurement instruments used in SDM studies in adults or children living with rheumatic or musculoskeletal diseases or their important others. Paired reviewers independently screened titles, abstracts, and full text articles. We extracted characteristics of all candidate instruments (e.g., measured construct, measurement properties). We classified candidate instruments and summarized evidence gaps with an adapted version of the Summary of Measurement Properties (SOMP) table. RESULTS: We found 14,464 citations, read 239 full text articles, and included 99 eligible studies. We identified 220 potential candidate instruments. The five most used measurement instruments were the Decisional Conflict Scale (traditional and low literacy versions) (n=38), the Hip/Knee-Decision Quality Instrument (n=20), the Decision Regret Scale (n=9), the Preparation for Decision Making Scale (n=8), and the CollaboRATE (n=8). Only 44 candidate instruments (20%) had any measurement properties reported by the included studies. Of these instruments, only 57% matched with at least one of the 7-criteria adapted SOMP table. CONCLUSION: We identified 220 candidate instruments used in the SDM literature amongst people with rheumatic and musculoskeletal diseases. Our classification of instruments showed evidence gaps and inconsistent reporting of measurement properties. The next steps for the OMERACT SDM Working Group are to match candidate instruments with Core Domains, assess feasibility and review validation studies of measurement instruments in rheumatic diseases or other conditions. Development and validation of new instruments may be required for some Core Domains.
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Tomada de Decisão Compartilhada , Doenças Musculoesqueléticas , Avaliação de Resultados em Cuidados de Saúde , Doenças Reumáticas , Humanos , Reumatologia/normas , Participação do PacienteRESUMO
Secondary-level healthcare professionals, mainly rheumatologists and orthopedic surgeons, were invited to participate in an online survey questionnaire to assess knowledge and compliance with osteoporosis management guidelines and strategies, as well as self-reported quality of care. About 51% of the participants admit that they do not implement specific guidelines for the management of osteoporosis in their standard practice and depend on their experience and their clinical judgments. Moreover, although a good percentage (58%) had satisfactory knowledge levels in domains on the risk of osteoporotic fractures and investigations of osteoporosis, 47.5% of the participants did not score satisfactorily in questions on pharmacotherapy, especially for those patients at high risk for fractures. INTRODUCTION: A recently published study demonstrated a treatment gap among those eligible for osteoporosis therapy in Egypt of about 82.1% in postmenopausal women and 100% in men. The current survey aimed to address some of the factors that may contribute to this wide gap. METHODS: This was a cross-sectional study of secondary care healthcare professionals (both physicians and orthopedic surgeons) who were invited to complete an online questionnaire, which gathered information about physicians' socio-demographic data, knowledge, and compliance with osteoporosis management guidelines and strategies, as well as self-reported quality of care. Additionally, a knowledge score was calculated for all the participants. RESULTS: A good percentage (58%) had a satisfactory knowledge level in domains on the risk of osteoporotic fractures and investigations of osteoporosis; however, 47.5% did not score satisfactorily in questions on pharmacotherapy, especially for those patients at high risk for fractures. CONCLUSIONS: This work has identified some of the barriers to implementing guidelines for osteoporosis and fragility fracture management. In the meantime, it highlights the urgency of intensifying efforts to develop the knowledge and attitude of the healthcare professionals dealing with this condition in Egypt.
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Osteoporose , Fraturas por Osteoporose , Masculino , Humanos , Feminino , Fraturas por Osteoporose/prevenção & controle , Fraturas por Osteoporose/complicações , Egito , Densidade Óssea , Estudos Transversais , Conhecimentos, Atitudes e Prática em Saúde , Osteoporose/diagnóstico , Osteoporose/tratamento farmacológico , Inquéritos e QuestionáriosRESUMO
Objectives: Based on the mainstream adoption of nailfold capillaroscopy as an investigative tool for rheumatologists, this work was carried out by a panel of experts in the field of capillaroscopy and microcirculation to issue a consensus view on capillaroscopic image acquisition and analysis standardization. Patients and methods: After the key clinical questions were identified by the core team, a systematic review of the published research was carried out focusing on variable capillaroscopic techniques, definitions, and characteristics, including capillary density (number of capillaries), capillary morphology (shape of each capillary), capillary dimensions (width of apical, arterial, and venous limb of the capillary), and the presence of hemorrhages. The expert panel attained a consensus and developed recommendations for the standardization of capillaroscopy in clinical practice. These included recommendations for normality and abnormality and the different capillaroscopic patterns. It also involved recommendations for scoring systems, reliability, and reporting. Results: A panel of 11 experts participated in the two rounds with a response rate of 100%. A total of nine recommendations were obtained. The agreement with the recommendations (a score of 7-9) ranged from 81.8 to 90.9%. A consensus (i.e., ≥75% of respondents strongly agreed or agreed) was reached on all the clinical standards. Conclusion: This work highlighted the main NFC indications, the technical equipment that should be used, how to carry out the procedure, standardization of the terminology of the parameters, and the interpretation of NFC findings. An evidence-based consensus incorporating the advice and experience of a diverse international expert panel was reached.
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Since falling is the third cause of chronic disability, a better understanding of the frequency, severity, and risk factors of falls across diagnostic groups is needed to design and implement customized, effective fall prevention, and management programs for these individuals, particularly those at risk of sustaining a fragility fracture. OBJECTIVE: (1) To assess the incidence of falls among osteoporotic patients with fragility fractures. (2) To evaluate the potential for stratifying the people at risk of falling in bone health setting aiming to provide targeted optimum care for them. METHODS: This was a multi-center, cross-sectional, observational study. Both men and postmenopausal women, admitted with an osteoporotic fracture (whether major osteoporosis or hip fracture), were consecutively recruited for this work and managed under Fracture Liaison Service. All the patients were assessed for their Fracture risk (FRAX), falls risk (FRAS), and sarcopenia risk (SARC-F) as well as functional disability (HAQ). Blood tests for bone profile as well as DXA scan were offered to all the patients. RESULTS: Four hundred five patients (121 males, 284 females) were included in this work. Mean age was 70.1 (SD = 9.2) years. The incidence of falls was 64.9%. The prevalence of falls was high (64.8%) in the patients presenting with major osteoporosis fractures and in those with hip fractures (61.8%). The prevalence of fragility fractures was positively correlated with HAQ score and the SARC-F score (p = 0.01 and 0.021 respectively). Falls risk score was positively correlated with FRAX score of major osteoporotic fractures, HAQ score, and SARC-F score (p = 0.01, 0.013, and 0.003 respectively). Seventy percent of the osteopenia patients who sustained fragility fracture had high falls risk and/or SARC-F score. CONCLUSION: This study highlighted the importance of falls risk stratification in osteoporotic patients presenting with fragility fractures. Identification of the patients at increased risk of falls should be a component of the standard practice.
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Fraturas do Quadril , Osteoporose , Fraturas por Osteoporose , Masculino , Humanos , Feminino , Idoso , Fraturas por Osteoporose/epidemiologia , Fraturas por Osteoporose/terapia , Acidentes por Quedas/prevenção & controle , Densidade Óssea , Estudos Transversais , Egito , Osteoporose/diagnóstico , Fraturas do Quadril/epidemiologia , Fraturas do Quadril/terapia , Fatores de Risco , Medição de RiscoRESUMO
This work studies the epidemiology of hip fracture in Egypt. While the incidence of hip fracture in Egypt matches that of the Mediterranean region, there was geographic variation in osteoporotic hip fracture incidence between the north and south of Egypt. PURPOSE: To assess the incidence of hip fracture in Egypt, with special emphasis on the geographic and demographic variation among the Egyptian population. METHODS: The incidence of hip fractures treated in two Egyptian FLS centers was calculated for the period of February 2022-February 2023. Demographic information was recorded for every patient on the national register. All patients completed a baseline questionnaire, had clinical evaluation, fracture risk, falls, and sarcopenia risk assessment. A DXA scan was carried out for every patient. RESULTS: The annual incidence of low-energy hip fracture in individuals aged 40 years or more in Egypt in 2022-2023 was 123.34 per 100,000 in women and 55.19 per 100,000 in men. The incidence of hip fractures was higher in south Egypt (113.62) versus north Egypt (64.8). This was consistent for both genders. Bone mineral density was significantly (p < 0.01) lower in south Egypt at both the spine, distal forearm, as well as hip trochanters, whereas there was no significant difference between both locations in terms of the total hip and neck of the femur. Yet, falls risk, sarcopenia, as well as functional disability rates were significantly (p < 0.001) higher in the north. CONCLUSION: In Egypt, the hip fracture incidence was higher in the south compared to the north. Several modifiable factors contribute to fragility fracture risk independent of BMD, creating complex interrelationships between BMD, risk factors, and fracture risk.
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Fraturas do Quadril , Fraturas por Osteoporose , Sarcopenia , Feminino , Humanos , Masculino , Egito/epidemiologia , Densidade Óssea , Incidência , Fraturas do Quadril/epidemiologia , Fraturas por Osteoporose/epidemiologiaRESUMO
BACKGROUND: Developments in outcome measures in the rheumatic diseases are promoted by the development of successful treatments. Giant cell arteritis (GCA) is a multifaceted disorder and, therefore, measurement of multiple outcomes is relevant to this illness. It is a privilege to analyze and monitor/transfer long-term patients' management outcomes particularly if the same outcomes are used in practice and in trials. OBJECTIVE: To classify the outcome measures for GCA with a discriminative ability to identify the disease activity status and response to therapy. METHODS: This study was composed of two steps, instrument design (item generation) and judgmental evidence. A panel of 13 experts was used to validate the instrument through quantitative (content validity) and qualitative (cognitive interviewing) methods. Content validity index was used to assess content validity quantitatively. RESULTS: Five items achieved high content validity where item-content validity index score was >0.79, and in the meantime achieved high content validity response score reflecting greater agreement among panel members. Through qualitative methods, items were improved until saturation was achieved. This agreed with the expert panel ranking of the items included in GCA disease outcome measures set. CONCLUSION: For daily clinical practice, outcome measures should reflect the patients' disease activity status and have to be easily assessed and recorded. The study identified composite outcome measures for GCA able to assess the disease state and monitor response to therapy. Key Points ⢠Despite the cohort studies published in giant cell arteritis (GCA), there are no fully validated outcome measures for use in standard practice or clinical trials. ⢠There is a gap in international standards for assessing GCA disease activity. ⢠Identifying disease specific outcome measures is vital for monitoring response to therapy, treatment case series and therapeutic clinical trials in GCA. ⢠This study was carried out aiming to classify the outcome measures for GCA with a discriminative ability to identify the disease activity status and response to therapy.
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Arterite de Células Gigantes , Doenças Reumáticas , Humanos , Arterite de Células Gigantes/psicologia , Avaliação de Resultados em Cuidados de SaúdeRESUMO
Biosimilars are products which are highly similar to a reference biologic product (RBP). In Africa, regulatory frameworks for biosimilar approval are still in development in many countries and few biosimilars for rheumatic diseases are currently available. The use of biosimilar medicines in Africa provides an important opportunity to treat more rheumatology patients with biologic drugs. This editorial aims to shed a light on the potential benefits, challenges and current efforts, regarding the use of biosimilars in Africa in Rheumatology.
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Medicamentos Biossimilares , Doenças Reumáticas , Reumatologia , Humanos , Medicamentos Biossimilares/uso terapêutico , Doenças Reumáticas/tratamento farmacológico , ÁfricaRESUMO
PURPOSE OF REVIEW: To present and discuss the recently published scientific evidence on the approach, mode of action, and timing of osteoporosis therapy initiation after fragility fractures. RECENT FINDINGS: A comprehensive management approach is required to reduce mortality and morbidity associated with fragility fractures. This will help to reduce the risk of missing the diagnosis of osteoporosis as the underlying disorder while at the same time promoting the timely treatment of osteoporosis. The target is to minimize the incidence of post-traumatic disability and to reduce the imminent fracture risk. This article will present a Bone-Care algorithm for the diagnosis and management of fragility fractures in patients presenting for trauma surgery. This algorithm has been developed based on recently published national as well as international guidelines for implementation in standard clinical practice. International figures revealed that only a small proportion of those patients at high risk of sustaining a fragility fracture receive osteoporosis therapy. Based on the best currently available evidence, it is safe to start osteoporosis therapy in the acute post-fracture period (the optimal therapeutic window of romosozumab is the late endochondral phase/throughout bone remodeling). The right Bone-Care pathway ensures the delivery of a comprehensive management approach that meets the global call to action. All parameters including risk, benefit, compliance, and cost should be considered on an individual base for all kinds of therapy.
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Conservadores da Densidade Óssea , Fraturas Ósseas , Osteoporose , Fraturas por Osteoporose , Humanos , Idoso , Osteoporose/complicações , Osteoporose/tratamento farmacológico , Fraturas Ósseas/etiologia , Fraturas por Osteoporose/prevenção & controle , Fraturas por Osteoporose/complicações , Conservadores da Densidade Óssea/uso terapêuticoRESUMO
Despite the wide availability of a wide variety of approved osteoporosis medications and DXA scan centers in Egypt, only a minority of patients at high risk of sustaining a fragility fracture receive treatment, even after their first fracture. Such big "treatment gap" leaves the most high-risk individuals unprotected against fragility fractures. This study provides a benchmark to monitor national trends in osteoporosis management and service uptake. PURPOSE: To assess the treatment gap among men and postmenopausal women presenting with a fragility fracture, and to analyze the characteristics and fracture risks of the patients presenting with an index fragility fracture. METHODS: This was a multi-center, cross-sectional, observational study. Both men and postmenopausal women, admitted with an osteoporotic fracture (whether major osteoporosis or hip fracture), were consecutively recruited for this work. The fracture risk was assessed based on their FRAX calculation prior to the index fracture. All the patients were assessed for their falls and sarcopenia risks. Blood tests for bone profile as well as DXA scan were offered to all the patients. RESULTS: Two hundred and thirty-six patients presenting with fragility fractures were included in this work. 70.8% were women and 29.2% were men. Mean age was 70.1 (SD = 9.2) years. Ten-year probability of fracture (without BMD) was high in 65.9% of the postmenopausal women and 40.3% of the men. 82.1% of the postmenopausal women and 100% in men identified to be eligible for osteoporosis therapy did not receive any form of osteoporosis therapy. FRAX score correlated significantly with bone mineral density assessment at both hip and spine. Falls, sarcopenia, and functional disability showed significant relation to the fracture risk. CONCLUSIONS: There is a large treatment gap in Egyptian older adults. The recent guidelines for osteoporosis management in Egypt endorsed fracture centric approach to identify people at risk. The gap appears to be related to a low rate of osteoporosis diagnosis and lack of patient education.
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Osteoporose , Fraturas por Osteoporose , Sarcopenia , Masculino , Humanos , Feminino , Idoso , Egito , Estudos Transversais , Fatores de Risco , Osteoporose/tratamento farmacológico , Densidade Óssea , Medição de RiscoRESUMO
Objective: The aim of this study was to reach a consensus on an updated version of the recommendations for the diagnosis and Treat-to-Target management of osteoporosis that is effective and safe for individuals with chronic kidney disease (CKD) G4-G5D/kidney transplant. Methods: Delphi process was implemented (3 rounds) to establish a consensus on 10 clinical domains: (1) study targets, (2) risk factors, (3) diagnosis, (4) case stratification, (5) treatment targets, (6) investigations, (7) medical management, (8) monitoring, (9) management of special groups, (10) fracture liaison service. After each round, statements were retired, modified, or added in view of the experts' suggestions, and the percent agreement was calculated. Statements receiving rates of 7-9 by more than 75% of experts' votes were considered as achieving consensus. Results: The surveys were sent to an expert panel (n = 26), of whom 23 participated in the three rounds (2 were international experts and 21 were national). Most of the participants were rheumatologists (87%), followed by nephrologists (8.7%), and geriatric physicians (4.3%). Eighteen recommendations, categorized into 10 domains, were obtained. Agreement with the recommendations (rank 7-9) ranged from 80 to 100%. Consensus was reached on the wording of all 10 clinical domains identified by the scientific committee. An algorithm for the management of osteoporosis in CKD has been suggested. Conclusion: A panel of international and national experts established a consensus regarding the management of osteoporosis in CKD patients. The developed recommendations provide a comprehensive approach to assessing and managing osteoporosis for all healthcare professionals involved in its management.
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Although nailfold capillaroscopy (NFC) appears to have a bright future in clinical practice, the lack of familiarity with the technique and how to interpret its outcomes is major barriers which have made nailfold capillaroscopy an underutilized method in standard clinical practice. Traditional methods for assessment and measurement of capillary patterns, density, and blood flow are falling behind and face some challenges. In fact, there have been calls for improvement, hence the recent publication of the standardization of NFC by the EULAR Study Group on Microcirculation in Rheumatic Diseases. Nailfold capillaroscopy has the advantage of being a non-invasive technique that provides a window into the digital microcirculation. This paved the way for a rapidly growing interest in using capillaroscopy parameters as outcome measures in research. In standard clinical practice, whilst its main application is in the identification of an underlying systemic sclerosis spectrum disorder in patients presenting with Raynaud's phenomenon, its use has expanded to include other clinical features possibly suggestive of an underlying connective tissue disease. This article presents the challenges, provides tips, and highlights the exciting potential of nailfold capillaroscopy in standard practice.
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Doenças do Tecido Conjuntivo , Doença de Raynaud , Escleroderma Sistêmico , Humanos , Angioscopia Microscópica/métodos , Unhas/diagnóstico por imagem , Unhas/irrigação sanguínea , Doença de Raynaud/diagnóstico por imagem , Capilares/diagnóstico por imagem , Doenças do Tecido Conjuntivo/diagnóstico por imagem , Escleroderma Sistêmico/diagnóstico por imagemRESUMO
IgA vasculitis (IgAV), formerly known as Henoch-Schönlein purpura, is the most common cause of systemic vasculitis in childhood. Given its potential life-threatening systemic complications, early and accurate diagnosis as well as management of IgAV represent a major challenge for health care professionals. This study was carried out to attain an evidence-based expert consensus on a treat-to-target management approach for IgAV using Delphi technique. The preliminary scientific committee identified a total of 16 key clinical questions according to the patient, intervention, comparison, and outcomes (PICO) approach. An evidence-based, systematic, literature review was conducted to compile evidence for the IgAV management. The core leadership team identified researchers and clinicians with expertise in IgAV management in Egypt upon which experts were gathered from different governorates and health centers across Egypt. Delphi process was implemented (two rounds) to reach a consensus. An online questionnaire was sent to expert panel (n = 26) who participated in the two rounds. After completing round 2, a total of 20 recommendation items, categorized into two sections were obtained. Agreement with the recommendations (rank 7-9) ranged from 91.7-100%. Consensus was reached (i.e. ⩾75% of respondents strongly agreed or agreed) on the wording of all the 20 clinical standards identified by the scientific committee. Algorithms for the diagnosis and management have been suggested. This was an expert, consensus recommendations for the diagnosis and treatment of IgAV and IgA vasculitic nephritis, based on best available evidence and expert opinion. The guideline presented a strategy of care with a pathway to achieve a state of remission as early as possible. PLAIN LANGUAGE SUMMARY: Given its potential life-threatening systemic complications, early and accurate diagnosis of immunoglobulin A vasculitis represents a major challenge for health care professionals. This work provided cornerstone principles for the management of the condition. Adopting PICO approach and implementing Delphi process a consensus was reached on evidence-based treat-to-target treatment recommendations. This will endorse enhancement and consistency of care of this cohort of patients in standard practice.
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OBJECTIVE: To gain consensus on the Outcome Measures in Rheumatology (OMERACT) core domain set for rheumatology trials of shared decision making (SDM) interventions. METHODS: The process followed the OMERACT Filter 2.1 methodology, and used consensus-building methods, with patients involved since the inception. After developing the draft core domain set in previous research, we conducted five steps: (i) improving the draft core domain set; (ii) developing and disseminating white-board videos to promote its understanding; (iii) conducting an electronic survey to gather feedback on the draft core domain set; (iv) finalizing the core domain set and developing summaries, a plenary session video and discussion boards to promote its understanding; and (v) conducting virtual workshops with voting to endorse the core domain set. RESULTS: A total of 167 participants from 28 countries answered the survey (62% were patients/caregivers). Most participants rated domains as relevant (81%-95%) and clear (82%-93%). A total of 149 participants (n = 48 patients/caregivers, 101 clinicians/researchers) participated in virtual workshops and voted on the proposed core domain set which received endorsement by 95%. Endorsed domains are: 1- Knowledge of options, their potential benefits and harms; 2- Chosen option aligned with each patient's values and preferences; 3- Confidence in the chosen option; 4- Satisfaction with the decision-making process; 5- Adherence to the chosen option and 6- Potential negative consequences of the SDM intervention. CONCLUSION: We achieved consensus among an international group of stakeholders on the OMERACT core domain set for rheumatology trials of SDM interventions. Future research will develop the Core Outcome Measurement Set. CLINICAL SIGNIFICANCE: Prior to this study, there had been no consensus on the OMERACT core domain set for SDM interventions. The current study shows that the OMERACT core domain set achieved a high level of endorsement by key stakeholders, including patients/caregivers, clinicians and researchers.
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Reumatologia , Consenso , Tomada de Decisão Compartilhada , Humanos , Avaliação de Resultados em Cuidados de SaúdeRESUMO
Autoimmune rheumatic diseases (ARDs), which include all types of inflammatory arthritis as well as systemic Lupus, are known to have a detrimental effect on both fertility and pregnancy outcomes. Consequently, reproductive health care is considered a principle constituent of comprehensive care for all patients with rheumatic ailments seen in the standard practice. Whilst pregnancy-associated complications have been reported in lupus, rheumatoid arthritis, and Sjogren's syndrome, in some conditions such as lupus, antiphospholipid syndrome, inflammatory myopathies, and vasculitis, the pregnancy may accelerate the disease progression. Furthermore, the activity of some diseases such as lupus and antiphospholipid syndrome may be augmented by some contraceptive methods. Therapeutically, some patients are prescribed medications, such as methotrexate and mycophenolate which have potentially teratogenic effect. Therefore, to be able to help those patients, family planning should be patient-centred with decision-making tailored to the individual's disease status. For those healthcare professionals interested in reproductive health care for their patients living with autoimmune rheumatic diseases, this review summarizes the available information in the literature and offers practical suggestions of patient-centred care in a dedicated rheumatology-led pregnancy clinic. Key Points ⢠Autoimmune disorders, particularly systemic inflammatory rheumatic diseases, affect many women, often during childbearing age. ⢠Pregnancies in this cohort of patients with rheumatic diseases is considered to be of high risk, because of the potential for complications during periods of active disease and the possible impact of medications used on both the pregnancy outcomes as well as the baby. ⢠There are high chances of successful and safe pregnancies particularly if pre-pregnancy planning and screening for maternal and fetal risks are undertaken, and pregnancy takes place while the disease is well controlled. Encouraging the patients, who are in their childbearing period, to initiate discussions about family planning and pregnancy, with their treating rheumatologists, would be an ideal approach to close this gap of information exchange. ⢠Targeted patients' education is expected to improve the information quality and promote more collaborative decision-making with regard to motherhood and healthcare choices.
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Doenças Autoimunes , Doenças Reumáticas , Reumatologia , Anticoncepção , Feminino , Humanos , Gravidez , Resultado da Gravidez , Doenças Reumáticas/tratamento farmacológicoRESUMO
The birth of reproductive rheumatology as a subject of interest in rheumatology has led to improvement of clinical care for patients living with autoimmune rheumatic diseases and paved the way towards setting a specialized pregnancy service within the standard rheumatology practice. In contrast to women, where there has been wealth of literature regarding pregnancy, lactation, and birth outcomes, there is not as much focusing on male sexual health and outcomes among inflammatory arthritis patients. Challenges such as decrease ability to conceive, impaired fertility, erectile dysfunction, and other sexual problems have been raised by male patients living with autoimmune rheumatic diseases. This broad scope gives the reproductive health concept in men another expansion with views to include sexual health problems screening among men attending the standard outpatient rheumatology clinics. This article adds to the paucity of real-life experience and aims at discussing the sexual health from the men perspective and provides a practical approach towards screening, and assessment of men living with autoimmune diseases in standard day to day practice.
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Artrite , Doenças Autoimunes , Doenças Reumáticas , Reumatologia , Instituições de Assistência Ambulatorial , Feminino , Humanos , Masculino , Gravidez , Saúde ReprodutivaRESUMO
OBJECTIVES: To identify the changes in rheumatology service delivery across the five regions of Africa from the impact of the COVID-19 pandemic. METHODS: The COVID-19 African Rheumatology Study Group created an online survey consisting of 40 questions relating to the current practices and experiences of rheumatologists across Africa. The CHERRIES checklist for reporting results of internet e-surveys was adhered to. RESULTS: A total of 554 completed responses were received from 20 countries, which include six in Northern Africa, six in West Africa, four in Southern Africa, three in East Africa and one in Central Africa. Consultant grade rheumatologists constituted 436 (78.7%) of respondents with a mean of 14.5 ± 10.3 years of experience. A total of 77 (13.9%) rheumatologists avoided starting a new biologic. Face-to-face clinics with the use of some personal protective equipment continued to be held in only 293 (52.9%) rheumatologists' practices. Teleconsultation modalities found usage as follows: telephone in 335 (60.5%), WhatsApp in 241 (43.5%), emails in 90 (16.3%) and video calls in 53 (9.6%). Physical examinations were mostly reduced in 295 (53.3%) or done with personal protective equipment in 128 (23.1%) practices. Only 316 (57.0%) reported that the national rheumatology society in their country had produced any recommendation around COVID-19 while only 73 (13.2%) confirmed the availability of a national rheumatology COVID-19 registry in their country. CONCLUSION: COVID-19 has shifted daily rheumatology practices across Africa to more virtual consultations and regional disparities are more apparent in the availability of local protocols and registries.