RESUMO
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.
Assuntos
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
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.
Assuntos
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.
Assuntos
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
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.
Assuntos
COVID-19 , Atenção à Saúde/métodos , Padrões de Prática Médica/estatística & dados numéricos , Reumatologistas , Adulto , África , Antirreumáticos/uso terapêutico , Produtos Biológicos/uso terapêutico , Atenção à Saúde/estatística & dados numéricos , Correio Eletrônico/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Aplicativos Móveis/estatística & dados numéricos , Equipamento de Proteção Individual , Exame Físico/métodos , Guias de Prática Clínica como Assunto , Sistema de Registros/estatística & dados numéricos , Doenças Reumáticas/terapia , Reumatologia , SARS-CoV-2 , Sociedades Médicas , Telemedicina/estatística & dados numéricos , Telefone/estatística & dados numéricos , Comunicação por Videoconferência/estatística & dados numéricosRESUMO
OBJECTIVE: To develop a composite disease activity score for systemic JIA (sJIA) and to provide preliminary evidence of its validity. METHODS: The systemic Juvenile Arthritis Disease Activity Score (sJADAS) was constructed by adding to the four items of the original JADAS a fifth item that aimed to quantify the activity of systemic features. Validation analyses were conducted on patients with definite or probable/possible sJIA enrolled at first visit or at the time of a flare, who had active systemic manifestations, which should include fever. Patients were reassessed 2 weeks to 3 months after baseline. Three versions were examined, including ESR, CRP or no acute-phase reactant. RESULTS: A total of 163 patients were included at 30 centres in 10 countries. The sJADAS was found to be feasible and to possess face and content validity, good construct validity, satisfactory internal consistency (Cronbach's alpha 0.64-0.65), fair ability to discriminate between patients with different disease activity states and between those whose parents were satisfied or not satisfied with illness outcome (P < 0.0001 for both), and strong responsiveness to change over time (standardized response mean 2.04-2.58). Overall, these properties were found to be better than those of the original JADAS and of DAS for RA and of Puchot score for adult-onset Still's disease. CONCLUSION: The sJADAS showed good measurement properties and is therefore a valid instrument for the assessment of disease activity in children with sJIA. The performance of the new tool should be further examined in other patient cohorts that are evaluated prospectively.
Assuntos
Artralgia/fisiopatologia , Artrite Juvenil/sangue , Artrite Juvenil/fisiopatologia , Qualidade de Vida , Anemia/sangue , Criança , Pré-Escolar , Exantema/fisiopatologia , Feminino , Febre/fisiopatologia , Hepatomegalia/fisiopatologia , Humanos , Hiperferritinemia/sangue , Linfadenopatia/fisiopatologia , Masculino , Medição da Dor , Amplitude de Movimento Articular , Reprodutibilidade dos Testes , Serosite/fisiopatologia , Índice de Gravidade de Doença , Esplenomegalia/fisiopatologia , Trombocitose/sangueRESUMO
BACKGROUND: The aim of this study is to evaluate the prevalence of vitamin-D insufficiency and vitamin-D receptor (VDR) polymorphisms in rheumatoid arthritis (RA) patients and its association with disease activity and patient reported outcomes (PROs). METHODS: Eighty-two individuals were included in a cross-sectional study (41 RA patients, 41 controls). Prior to assessment, each patient completed a PRO questionnaire. Serum vitamin-D levels and genotyping for VDR were assessed. Vitamin-D deficient patients received vitamin-D supplementation. Re-assessment of disease activity (DAS28) was performed after 9-months. RESULTS: Low vitamin-D levels were more frequent in RA patients (p < 0.01). A negative, but insignificant, association with DAS-28 score was identified; whereas, there was a significant negative association with the PROs (p < 0.01). Vitamin-D supplementation was associated with significant improvement in the patients' scores for pain, fatigue, global assessment, physical disability, and quality of life. In contrast to the control group, the frequency of the recessive TaqI and FokI genotypes was higher in RA patients. CONCLUSIONS: In RA patients, serum vitamin-D level was significantly and inversely associated with both PROs and disease activity. The TaqI and FokI fragment length polymorphisms of VDR significantly contributed to the risk of RA. Having a significant positive impact on patient reported outcomes, vitamin-D supplementation may have a role in RA management.
Assuntos
Artrite Reumatoide/tratamento farmacológico , Suplementos Nutricionais , Receptores de Calcitriol/genética , Deficiência de Vitamina D/tratamento farmacológico , Vitamina D/administração & dosagem , Adulto , Artrite Reumatoide/sangue , Artrite Reumatoide/genética , Estudos Transversais , Feminino , Genótipo , Humanos , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Polimorfismo Genético , Polimorfismo de Fragmento de Restrição , Qualidade de Vida , Índice de Gravidade de Doença , Inquéritos e Questionários , Vitamina D/sangue , Vitamina D/genética , Deficiência de Vitamina D/sangue , Deficiência de Vitamina D/genética , Vitaminas/administração & dosagem , Vitaminas/sangue , Vitaminas/genéticaRESUMO
The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient-reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Egyptian Arabic language. The reading comprehension of the questionnaire was tested in ten JIA parents and patients. Each participating centre was asked to collect demographic, clinical data and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the 3 Likert assumptions, floor/ceiling effects, internal consistency, Cronbach's alpha, interscale correlations, test-retest reliability, and construct validity (convergent and discriminant validity). A total of 100 JIA patients (20.0% systemic JIA, 40.0% undifferentiated arthritis, 24.0% RF negative polyarthritis, 16.0% other categories) and 100 healthy children were enrolled in one paediatric rheumatology centre. The JAMAR components discriminated well healthy subjects from JIA patients. All JAMAR components revealed satisfactory psychometric performances. In conclusion, the Egyptian Arabic version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and in clinical research.
Assuntos
Artrite Juvenil/diagnóstico , Avaliação da Deficiência , Medidas de Resultados Relatados pelo Paciente , Reumatologia/métodos , Adolescente , Idade de Início , Artrite Juvenil/fisiopatologia , Artrite Juvenil/psicologia , Artrite Juvenil/terapia , Estudos de Casos e Controles , Criança , Pré-Escolar , Características Culturais , Egito , Feminino , Nível de Saúde , Humanos , Masculino , Pais/psicologia , Pacientes/psicologia , Valor Preditivo dos Testes , Prognóstico , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , TraduçãoRESUMO
In spite of the dramatic improvement of the long-term prognosis of inflammatory arthritic conditions, patients living with arthritis remain more likely to have a shorter lifespan in contrast to the age-matched population without arthritis. This high incidence of morbidity-mortality has been attributed to an increased prevalence of comorbidities, particularly cardiovascular disease, infections, and the development of malignant space-occupying lesions. In spite of the published guidelines highlighting the importance of comorbidity assessment and management, implementing these recommendations in standard clinical practice remains a challenge for the treating rheumatologists and rheumatology nurse specialists. This article will review the challenge of comorbidity in inflammatory arthritic conditions and its dynamic nature, the impact on patient management, as well as recent trends in the screening and assessment of comorbidity risk in standard clinical practice.
Assuntos
Doenças Reumáticas/complicações , Humanos , Guias de Prática Clínica como Assunto , Doenças Reumáticas/terapiaRESUMO
Providing adequate care for people with inflammatory arthritis is an ongoing challenge. In recent years significant progress has been made in the treatment of inflammatory arthritic conditions. The availability of a wide range of disease-modifying anti-rheumatic drugs as well as biologic therapies has not only improved treatment, but also made treatment decisions much more complex. This wider range of improved treatment options happened at the same time as a clear move towards patient-centred care and implementing shared decision making for both medical and surgical conditions. Implementing shared decision making has been reported to be associated with higher satisfaction and better adherence to therapy. Electronic shared decision making has more recently been suggested as a tool for clinical practice. The aim of this article is to look at further integrating shared decision making in standard rheumatology practice in view of the available evidence and the outcomes of a study looking at a recently developed patient shared decision guide.
Assuntos
Artrite/terapia , Tomada de Decisões , Técnicas de Apoio para a Decisão , Humanos , Assistência Centrada no PacienteRESUMO
Monoclonal antibodies (MABs) represent the window of opportunity in modern medicine. As immunology plays a vital role both in our survival and in disease development, MABs were found to be of great help in diagnosing, prognosticating and managing certain malignancies, inflammatory conditions, autoimmune as well as infectious diseases. Technological advances have enabled the production of MABs that target specific antigens linked with several disease processes. These drugs are now a component of therapy, not only for many common malignancies, including breast, colorectal, lung and pancreatic cancers, as well as lymphoma, leukaemia and multiple myeloma, but also for several inflammatory conditions such as rheumatoid arthritis, ankylosing spondylitis, psoriatic arthritis and inflammatory bowel disease. Targeted therapy has raised new questions about tailoring treatment, including cancer management, to the individual patient's needs. This would have a positive impact on the drug's effectiveness and toxicity as well as the economics of care. While targeted MABs are generally better tolerated than traditional chemotherapy, they are associated with several adverse effects, which vary from one patient to another.
Assuntos
Anticorpos Monoclonais/administração & dosagem , Anticorpos Monoclonais/efeitos adversos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/etiologia , Terapia de Alvo Molecular , Neoplasias/tratamento farmacológico , Exposição Ocupacional/efeitos adversos , Assistência Centrada no Paciente/métodos , HumanosRESUMO
OBJECTIVES: We aimed to assess the validity and reliability of a Patient Reported Experience Measures (PREMs) questionnaire which can be used in standard clinical practice to measure self-defined important experiences of inflammatory arthritis patients. METHODS: The Patient Reported Experience Measures (PREMs) questionnaire was conceptualised based on frameworks used by the WHO Quality of Life tool, as well as the PRO measurement information system (PROMIS). Cognitive interviews were conducted with 94 inflammatory arthritis patients (diagnosed according to EULAR/ACR criteria 2010), with a range of severity and disease activity to identify item pool of questions. Item selection and reduction was achieved based on patients as well as an interdisciplinary group of physicians, nurses, health educators and occupational therapy (OTs) feedback, in addition to clinometric and psychometric methods. The latter included Rasch and internal consistency reliability analyses. The PREMs questionnaire was developed centered around 5 categories: 1. Journey to diagnosis, 2. Impact of the disease on the patients' everyday life, 3. knowledge about the disease, 4. the care in the hospital, and 5. patient education and aftercare (including what to do in case of exacerbation). After analysis for ordered response options, content analysis and semi structured group discussion to cover these 5 categories, 32 questions were identified as the final item set. The routine clinic was used as a setting for the questionnaire evaluation. 183 patients were asked to complete the PROMs as well as PREMs questionnaires whilst sitting in the waiting area before being examined by the treating physician. Reliability and comprehensibility was assessed using the Test-retest reliability (reproducibility). RESULTS: The tool was derived from RA patients, therefore establishing its face validity. The PREMs questionnaire showed a high degree of comprehensibility (9.3). It demonstrated a relatively high-standardised alpha (0.892). The questionnaire items correlated significantly (p<0.01) with clinical parameters of disease activity, PROMs, self-helplessness and DAS-28 score supporting its construct validity. The domain of impact of arthritis correlated significantly (p<0.01) with health related quality of life (HRQOL) score as well as disease activity and damage measures, establishing its criterion validity. Patient education and aftercare correlated significantly (p<0.01) with adherence to therapy. CONCLUSIONS: The studied PREMs questionnaire had fair psychometric properties as it was valid, reliable and comprehensible. The patients were able to comprehend varying response options on a categorical scale, and could accurately respond to items using a 7-day recall period. It provides informative measure for the patients' experience with their disease, and in the meantime, facilitates incorporating the patients' feedback into the patients' management algorithm.
Assuntos
Artrite/diagnóstico , Artrite/terapia , Conhecimentos, Atitudes e Prática em Saúde , Avaliação de Processos e Resultados em Cuidados de Saúde/normas , Pacientes/psicologia , Percepção , Indicadores de Qualidade em Assistência à Saúde/normas , Inquéritos e Questionários , Adulto , Idoso , Idoso de 80 Anos ou mais , Artrite/fisiopatologia , Artrite/psicologia , Compreensão , Feminino , Humanos , Masculino , Rememoração Mental , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Psicometria , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Fatores de Tempo , Resultado do TratamentoRESUMO
Integrating the rheumatoid arthritis (RA) treat-to-target concept into standard clinical practice represents a challenge to health professionals. So far, this practice-changing approach has not been widely implemented, in spite of linking its outcome to payment, which was adopted in the best practice tariffs. The recently published revisions in classification criteria and updated recommendations for optimising the use of disease-modifying anti-rheumatic and biologic agents in the treatment of RA paved the way for re-evaluating the standard clinical care models in order to improve patient outcomes, prevent joint damage, and maintain patients' functional ability as well as their quality of life. This article discusses the recent advances in the management of RA and provides a set of recommendations to provide comprehensive guidance for treatment to target with the aim of improving the quality of care for RA patients.
Assuntos
Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Algoritmos , Doenças Cardiovasculares/prevenção & controle , Humanos , Educação de Pacientes como Assunto , Avaliação de Resultados da Assistência ao Paciente , Indução de Remissão , Medição de RiscoRESUMO
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.
Assuntos
Técnica Delphi , Angioscopia Microscópica , Humanos , Consenso , Doença de Raynaud/diagnóstico , Unhas/irrigação sanguínea , Unhas/diagnóstico por imagemRESUMO
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.
Assuntos
Tomada de Decisão Compartilhada , Doenças Musculoesqueléticas , Avaliação de Resultados em Cuidados de Saúde , Doenças Reumáticas , Humanos , Reumatologia/normas , Participação do PacienteRESUMO
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.
Assuntos
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.
Assuntos
Reumatologia , Humanos , Consenso , Tomada de Decisão Compartilhada , Avaliação de Resultados em Cuidados de SaúdeRESUMO
There exists significant evidence of increased risk of cardiovascular (CV) disease in rheumatoid arthritis (RA) patients in comparison with the general population. This finding has been supported by a number of guidelines recommending screening for CV disease risk in patients with the disease. However, the opportunity to identify and manage those patients at risk has been missed in both primary and secondary care. The success of CV risk management in diabetes patients provides a clear incentive to identify and actively manage CV risk in all RA patients as part of routine practice. This article provides an approach that shows how to assess for CV risk in standard clinical practice.
Assuntos
Artrite Reumatoide/terapia , Doenças Cardiovasculares/prevenção & controle , Administração dos Cuidados ao Paciente/métodos , Algoritmos , Artrite Reumatoide/epidemiologia , Doenças Cardiovasculares/epidemiologia , Comorbidade , Humanos , Guias de Prática Clínica como Assunto , Medição de Risco , Autocuidado , Inquéritos e Questionários , Reino Unido/epidemiologiaRESUMO
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.
Assuntos
Osteoporose , Fraturas por Osteoporose , Sarcopenia , Masculino , Humanos , Feminino , Idoso , Egito , Estudos Transversais , Fatores de Risco , Osteoporose/tratamento farmacológico , Densidade Óssea , Medição de RiscoRESUMO
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.