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1.
Rheumatol Adv Pract ; 8(2): rkae021, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38560641

RESUMO

Objectives: The primary aim of the CHANGE survey is to determine the current state of gender equity within rheumatology, and secondarily, to review the physician perspective on bullying, harassment and equipoise of opportunities within rheumatology. Methods: The CHANGE e-survey is a cross-sectional self-reported questionnaire adapted from EULAR's gender equity in academic rheumatology task force. The survey was launched in January 2023; it is available in six languages and distributed widely via rheumatology organizations and social media. Eligible participants include rheumatologist physicians and rheumatology health-care professionals. Survey responses will undergo descriptive analysis and inter-group comparison aiming to explore gender-based discrimination using logistic regression, with subgroup analyses for country/continent variations. Conclusion: This e-survey represents a comprehensive global initiative led by an international consortium, aimed at exploring and investigating the gender-related disparities and obstacles encountered by rheumatologists and rheumatology health-care professionals across diverse communities and health-care environments. By pursuing this initiative, we aim to take the broader rheumatology community a step closer to understanding the underlying origins of inequities and their determinants. Such insights are pivotal in identifying viable interventions and strategies to foster gender equity within the field. Ultimately, our collective objective is to ensure equitable access to opportunities for every individual, irrespective of gender, thereby promoting inclusivity and fairness across the entire spectrum of professional practice and career development.

2.
RMD Open ; 10(2)2024 Apr 12.
Artigo em Inglês | MEDLINE | ID: mdl-38609321

RESUMO

BACKGROUND: According to epidemiological studies, psychosocial factors are known to be associated with disease activity, physical activity, pain, functioning, treatment help-seeking, treatment waiting times and mortality in people with rheumatoid arthritis (RA). Limited qualitative inquiry into the psychosocial factors that add to RA disease burden and potential synergistic interactions with biological parameters makes it difficult to understand patients' perspectives from the existing literature. AIM: This study aimed to gather in-depth patient perspectives on psychosocial determinants that drive persistently active disease in RA, to help guide optimal patient care. METHODS: Patient research partners collaborated on the research design and materials. Semistructured interviews and focus groups were conducted online (in 2021) with patients purposively sampled from diverse ethnicities, primary languages, employment status and occupations. Data were analysed using inductive thematic analysis. RESULTS: 45 patients participated across 28 semistructured interviews and three focus groups. Six main themes on psychosocial determinants that may impact RA management were identified: (1) healthcare systems experiences, (2) patient education and health literacy, (3) employment and working conditions, (4) social and familial support, (5) socioeconomic (dis)advantages, and (6) life experiences and well-being practices. CONCLUSION: This study emphasises the importance of clinicians working closely with patients and taking a holistic approach to care that incorporates psychosocial factors into assessments, treatment plans and resources. There is an unmet need to understand the relationships between interconnected biopsychosocial factors, and how these may impact on RA management.


Assuntos
Artrite Reumatoide , Humanos , Pesquisa Qualitativa , Grupos Focais , Artrite Reumatoide/epidemiologia , Artrite Reumatoide/terapia , Efeitos Psicossociais da Doença , Gerenciamento Clínico
3.
Semin Arthritis Rheum ; 66: 152422, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38461757

RESUMO

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


Assuntos
Diversidade Cultural , Reumatologia , Humanos , Feminino , Masculino , Sociedades Médicas , Adulto , Pessoa de Meia-Idade , Inquéritos e Questionários
4.
Rheumatology (Oxford) ; 63(3): 657-664, 2024 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-37228012

RESUMO

OBJECTIVES: We aimed to explore current practice and interregional differences in the treatment of idiopathic inflammatory myopathies (IIMs). We triangulated these observations considering countries' gross national income (GNI), disease subtypes, and symptoms using patient-reported information. METHODS: A cross-sectional ancillary analysis of the 'COVID-19 vaccination in auto-immune disease' (COVAD) e-survey containing demographic characteristics, IIM subtypes (DM, PM, IBM, anti-synthetase syndrome [ASSD], immune-mediated necrotizing myopathy [IMNM], overlap myopathies [OM]), current symptoms (surrogate for organ involvement) and treatments (corticosteroids [CS], immunomodulators [IM], i.e. antimalarials, immunosuppressants [IS], IVIG, biologic treatments and targeted-synthetic small molecules). Treatments were presented descriptively according to continents, GNI, IIM and organ involvement, and associated factors were analysed using multivariable binary logistic regressions. RESULTS: Of 18 851 respondents from 94 countries, 1418 with IIM were analysed (age 61 years, 62.5% females). DM (32.4%), IBM (24.5%) and OM (15.8%) were the most common subtypes. Treatment categories included IS (49.4%), CS (38.5%), IM (13.8%) and IVIG (9.4%). Notably, treatments varied across regions, GNI categories (IS mostly used in higher-middle income, IM in lower-middle income, IVIG and biologics largely limited to high-income countries), IIM subtypes (IS and CS associated with ASSD, IM with OM and DM, IVIG with IMNM, and biologic treatments with OM and ASSD) and disease manifestations (IS and CS with dyspnoea). Most inter-regional treatment disparities persisted after multivariable analysis. CONCLUSION: We identified marked regional treatment disparities in a global cohort of IIM. These observations highlight the need for international consensus-driven management guidelines considering patient-centred care and available resources.


Assuntos
Doenças Autoimunes , Miosite , Feminino , Humanos , Pessoa de Meia-Idade , Masculino , Vacinas contra COVID-19 , Estudos Transversais , Imunoglobulinas Intravenosas/uso terapêutico , Miosite/tratamento farmacológico , Imunossupressores/uso terapêutico , Adjuvantes Imunológicos
5.
Autoimmun Rev ; 22(7): 103351, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37121530

RESUMO

A syndemic is the co-existence of two or more health problems (including both social and biological features) that adversely influence each other with negative consequences on disease outcomes and perpetuation of inequalities. The syndemic approach can be applied to better understand the course of rheumatic musculoskeletal diseases (RMD) involving the study of adverse biological pathways and social determinants of health (SDH) all under the same framework. Identifying if a syndemic exists within RMDs may include investigating the synergic interactions between comorbidity (e.g., diabetes, obesity, chronic kidney diseases) and the concomitant of other adverse conditions (e.g., drug non-adherence, substance abuse), along with SDHs such as low household income, unemployment, low education, limited access to health care, as well as racial/ethnic discrimination. For decades, the understanding of RMDs progression has been based on causality, rather than investigating the kaleidoscopic web of connections that can potentially influence a disease course. The co-existence of health burdens in vulnerable populations, including those with RMD, specifically in certain socioeconomic groups, calls for new ways and strategies of thinking to improve our understanding of risk factors and co-morbidities to offer tailored interventions for clinical medicine and public health policy.


Assuntos
Doenças Musculoesqueléticas , Doenças Reumáticas , Humanos , Determinantes Sociais da Saúde , Sindemia , Comorbidade , Fatores de Risco , Doenças Reumáticas/epidemiologia
6.
Arthritis Care Res (Hoboken) ; 75(5): 1026-1035, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36576238

RESUMO

OBJECTIVE: To investigate how social support, financial status, and lifestyle influence the development of excess disability in rheumatoid arthritis (RA). METHODS: Data were obtained from the Étude et Suivi des Polyarthrites Indifférenciées Récentes (ESPOIR) cohort study of people with RA. A previous analysis identified groups with similar inflammation trajectories but markedly different disability over 10 years; those in the higher disability trajectory groups were defined as having "excess disability." Self-reported data regarding contextual factors (social support, financial situation, lifestyle) were obtained from participants, and they completed patient-reported outcome measures (pain, fatigue, anxiety, depression) at baseline. The direct effect of the contextual factors on excess disability and the effect mediated by patient-reported outcome measures were assessed using structural equation models. Findings were validated in 2 independent data sets (Norfolk Arthritis Register [NOAR], Early Rheumatoid Arthritis Network [ERAN]). RESULTS: Of 538 included ESPOIR participants (mean age ± SD 48.3 ± 12.2 years; 79.2% women), 200 participants (37.2%) were in the excess disability group. Less social support (ß = 0.17 [95% confidence interval (95% CI) 0.08, 0.26]), worse financial situation (ß = 0.24 [95% CI 0.14, 0.34]), less exercise (ß = 0.17 [95% CI 0.09-0.25]), and less education (ß = 0.15 [95% CI 0.06, 0.23]) were associated with excess disability group membership; smoking, alcohol consumption, and body mass index were not. Fatigue and depression mediated a small proportion of these effects. Similar results were seen in NOAR and ERAN. CONCLUSION: Greater emphasis is needed on the economic and social contexts of individuals with RA at presentation; these factors might influence disability over the following decade.


Assuntos
Artrite Reumatoide , Humanos , Feminino , Masculino , Estudos de Coortes , Inflamação , Estilo de Vida , Apoio Social , Apoio Financeiro
7.
RMD Open ; 8(2)2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35940824

RESUMO

OBJECTIVES: Evidence on the current status of gender equity in academic rheumatology in Europe and potential for its improvement is limited. The EULAR convened a task force to obtain empirical evidence on the potential unmet need for support of female rheumatologists, health professionals and non-clinical scientists in academic rheumatology. METHODS: This cross-sectional study comprised three web-based surveys conducted in 2020 among: (1) EULAR scientific member society leaders, (2) EULAR and Emerging EULAR Network (EMEUNET) members and (3) EULAR Council members. Statistics were descriptive with significance testing for male/female responses assessed by χ2 test and t-test. RESULTS: Data from EULAR scientific member societies in 13 countries indicated that there were disproportionately fewer women in academic rheumatology than in clinical rheumatology, and they tended to be under-represented in senior academic roles. From 324 responses of EULAR and EMEUNET members (24 countries), we detected no gender differences in leadership aspirations, self-efficacy in career advancement and work-life integration as well as the share of time spent on research, but there were gender differences in working hours and the levels of perceived gender discrimination and sexual harassment. There were gender differences in the ranking of 7 of 26 factors impacting career advancement and of 8 of 24 potential interventions to aid career advancement. CONCLUSIONS: There are gender differences in career advancement in academic rheumatology. The study informs a EULAR task force developing a framework of potential interventions to accelerate gender-equitable career advancement in academic rheumatology.


Assuntos
Reumatologia , Estudos Transversais , Europa (Continente)/epidemiologia , Feminino , Equidade de Gênero , Humanos , Masculino , Reumatologistas
8.
Rheumatology (Oxford) ; 61(5): 2043-2053, 2022 05 05.
Artigo em Inglês | MEDLINE | ID: mdl-34387300

RESUMO

OBJECTIVES: The aim of this study was to investigate the association between individual-level and country-level socio-economic (SE) factors and health outcomes across SpA phenotypes. METHODS: Patients with axial SpA (axSpA), peripheral SpA (pSpA) or PsA from the ASAS-perSpA study (in 23 countries) were included. The effect of individual-level (age, gender, education and marital status) and country-level [e.g. Gross Domestic Product (GDP)] SE factors on health outcomes [Ankylosing Spondylitis Disease Activity Score (ASDAS) ≥ 2.1, ASDAS, BASFI, fatigue and the Assessment of SpondyloArthritis international Society Health Index (ASAS-HI)] was assessed in mixed-effects models adjusted for potential confounders. Interactions between SE factors and disease phenotype were tested. A mediation analysis was conducted to explore whether the impact of country-level SE factors on ASDAS was mediated through biologic/targeted synthetic (b/ts) DMARD uptake. RESULTS: In total, 4185 patients (61% males, mean age 45) were included (65% axSpA, 25% PsA, 10% pSpA). Female gender [ß= 0.14 (95% CI: 0.06, 0.23)], lower educational level [ß = 0.35 (0.25, 0.45)) and single marital status [ß = 0.09 (0.01, 0.17)] were associated with higher ASDAS. Living in lower GDP countries was also associated with higher ASDAS [ß = 0.39 (0.16, 0.63)], and 7% of this association was mediated by b/tsDMARD uptake. Higher BASFI was similarly associated with female gender, lower education and living alone, without the effect of country-level SE factors. Female gender and lower educational level were associated with worse ASAS-HI, while more fatigue was associated with female gender and higher country-level SE factors [lower GDP, ß = -0.46 (-0.89 to -0.04)]. No differences across disease phenotypes were found. CONCLUSIONS: Our study shows country-driven variations in health outcomes in SpA, independently influenced by individual-level and country-level SE factors and without differences across disease phenotypes.


Assuntos
Antirreumáticos , Espondilartrite , Espondilite Anquilosante , Fatores Econômicos , Fadiga , Feminino , Humanos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Antígeno Prostático Específico , Índice de Gravidade de Doença , Espondilartrite/epidemiologia
9.
MAbs ; 13(1): 1868078, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33557682

RESUMO

The biosimilar concept is now well established. Clinical data accumulated pre- and post-approval have supported biosimilar uptake, in turn stimulating competition in the biologics market and increasing patient access to biologics. Following technological advances, other innovative biologics, such as "biobetters" or "value-added medicines," are now reaching the market. These innovative biologics differ from the reference product by offering additional clinical or non-clinical benefits. We discuss these innovative biologics with reference to CT-P13, initially available as an intravenous (IV) biosimilar of reference infliximab. A subcutaneous (SC) formulation, CT-P13 SC, has now been developed. Relative to CT-P13 IV, CT-P13 SC offers clinical benefits in terms of pharmacokinetics, with comparable efficacy, safety, and immunogenicity, as well as increased convenience for patients and reduced demands on healthcare system resources. As was once the case for biosimilars, nomenclature and regulatory pathways for innovative biologics require clarification to support their uptake and ultimately benefit patients.


Assuntos
Anticorpos Monoclonais/administração & dosagem , Medicamentos Biossimilares/administração & dosagem , Desenvolvimento de Medicamentos , Infliximab/administração & dosagem , Administração Intravenosa , Animais , Anticorpos Monoclonais/efeitos adversos , Anticorpos Monoclonais/economia , Anticorpos Monoclonais/farmacocinética , Medicamentos Biossimilares/efeitos adversos , Medicamentos Biossimilares/economia , Medicamentos Biossimilares/farmacocinética , Análise Custo-Benefício , Difusão de Inovações , Composição de Medicamentos , Custos de Medicamentos , Desenvolvimento de Medicamentos/economia , Humanos , Infliximab/efeitos adversos , Infliximab/economia , Infliximab/farmacocinética , Injeções Subcutâneas
10.
Ann Rheum Dis ; 80(1): 65-70, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-32788400

RESUMO

BACKGROUND AND AIM: Striving for harmonisation of specialty training and excellence of care in rheumatology, the European League Against Rheumatism (EULAR) established a task force to develop points to consider (PtCs) for the assessment of competences during rheumatology specialty training. METHODS: A systematic literature review on the performance of methods for the assessment of competences in rheumatology specialty training was conducted. This was followed by focus groups in five selected countries to gather information on assessment practices and priorities. Combining the collected evidence with expert opinion, the PtCs were formulated by the multidisciplinary task force, including rheumatologists, medical educationalists, and people with rheumatic and musculoskeletal diseases. The level of agreement (LoA) for each PtC was anonymously voted online. RESULTS: Four overarching principles and 10 PtCs were formulated. The overarching principles highlighted the importance of assessments being closely linked to the rheumatology training programme and protecting sufficient time and resources to ensure effective implementation. In the PtCs, two were related to overall assessment strategy (PtCs 1 and 5); three focused on formative assessment and portfolio (PtCs 2-4); three focused on the assessment of knowledge, skills or professionalism (PtCs 6-8); one focused on trainees at risk of failure (PtC 9); and one focused on training the trainers (PtC 10). The LoA (0-10) ranged from 8.75 to 9.9. CONCLUSION: These EULAR PtCs provide European guidance on assessment methods throughout rheumatology training programmes. These can be used to benchmark current practices and to develop future strategies, thereby fostering continuous improvement in rheumatology learning and, ultimately, in patient care.


Assuntos
Competência Clínica , Avaliação Educacional , Reumatologia/educação , Currículo , Europa (Continente) , Grupos Focais , Humanos , Competência Profissional , Reumatologia/normas , Fatores de Tempo
11.
RMD Open ; 6(2)2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32934010

RESUMO

BACKGROUND: Multidisciplinary collaboration is defined as a collective work involving multiple disciplines and is common in clinical care and research. Our aim was to describe current clinical and research collaboration among young specialists and to identify unmet needs in this area. METHODS: An online survey was disseminated by email and social media to members of the EMerging EUlar NETwork, the Young Nephrologists' Platform, the Paediatric Rheumatology European Society Emerging Rheumatologists and Researchers and the European Academy of Allergy and Clinical Immunology Junior Members. RESULTS: Of 303 respondents from 36 countries, 61% were female, 21% were aged below 30 years and 67% were aged 31-40 years. Young rheumatologists were the most represented (39%), followed by young nephrologists (24%), young paediatricians (20%), young allergologists (11%) then young internists (3%) and 3% other specialities. Collaborations were reported frequently by phone and email, also by various combined clinics while common local multidisciplinary meetings were uncommon. 96% would like to develop clinical research collaborations and 69% basic research collaborations. The majority of young specialists would be interested in online (84%) and/or 1-2 days (85%) common courses including case discussion (81%) and training workshops (85%), as well as webinars recorded with several specialists on a specific disease (96%). CONCLUSIONS: This collaborative initiative highlighted wishes from young specialists for developing (1) regular local multidisciplinary meetings to discuss complex patients, (2) clinical research collaboration with combined grants and (3) multidisciplinary online projects such as common courses, webinars and apps.


Assuntos
Comunicação Interdisciplinar , Pesquisa Interdisciplinar , Pesquisadores , Especialização , Adulto , Fatores Etários , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente , Padrões de Prática Médica , Inquéritos e Questionários
12.
JMIR Mhealth Uhealth ; 8(4): e14351, 2020 04 20.
Artigo em Inglês | MEDLINE | ID: mdl-32310151

RESUMO

BACKGROUND: Despite the growing interest and exponential popularity of mobile health (mHealth) apps for long-term conditions such as rheumatic and musculoskeletal diseases (RMDs) and their self-management, patients are rarely directly consulted and involved in the app development process. OBJECTIVE: This study aims to explore the needs, experiences, and views of people diagnosed with RMDs on mHealth apps. METHODS: The study used a mixed methods approach: (1) an initial qualitative phase via a patient focus group in the UK and (2) a survey disseminated through national organizations for patients with RMDs across European countries, the United States, Canada, and Australia. RESULTS: The focus group included six patients with life-long musculoskeletal conditions. Half had used a self-management app at least once. The use of existing apps was reported as time-consuming due to a lack of functionality. The need for bespoke apps was voiced by all participants. Among 424 patients across European countries, the United States, Canada, and Australia, the main age group was 45 to 54 years (122/424, 28.7%), and 86.8% (368/424) were women. Half of the respondents were aware of the existence of apps to support self-management of their RMDs (188/355, 53%), with 42% (79/188) of them currently using such devices. Patients were mostly interested in an app to self-monitor their health parameters (259/346, 74.9%) and disease activity (221/346, 63.9%) or communicate directly with their health care provider (200/346, 57.8%). CONCLUSIONS: Patients considered that using an app could help them to self-manage their RMD condition if it was tailored to their needs and co-developed with health professionals. The development of such apps will require standardization and regular quality control.


Assuntos
Aplicativos Móveis , Doenças Musculoesqueléticas , Autogestão , Telemedicina , Austrália , Canadá , Europa (Continente) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doenças Musculoesqueléticas/diagnóstico , Doenças Musculoesqueléticas/terapia , Estados Unidos
13.
Rheumatology (Oxford) ; 58(11): 1991-1999, 2019 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-31329968

RESUMO

OBJECTIVES: Observational cohort studies in early RA are a key source of evidence, despite inconsistencies in methodological approaches. This narrative review assesses the spectrum of methodologies used in addressing centre-level effect and case-mix adjustment in early RA observational cohort studies. METHODS: An electronic search was undertaken to identify observational prospective cohorts of >100 patients recruited from two or more centres, within 2 years of an RA or early inflammatory arthritis diagnosis. References and author publication lists of all studies from eligible cohorts were assessed for additional cohorts. RESULTS: Thirty-four unique cohorts were identified from 204 studies. Seven percent of studies considered centre in their analyses, most commonly as a fixed effect in regression modelling. Reporting of case-mix variables in analyses varied widely. The number of variables considered in case-mix adjustment was higher following publication of the STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) statement in 2007. CONCLUSION: Centre effect is unreported or inadequately accounted for in the majority of RA observational cohorts, potentially leading to spurious inferences and obstructing comparisons between studies. Inadequate case-mix adjustment precludes meaningful comparisons between centres. Appropriate methodology to account for centre and case-mix adjustment should be considered at the outset of analyses.


Assuntos
Artrite Reumatoide , Estudos de Coortes , Grupos Diagnósticos Relacionados/estatística & dados numéricos , Estudos Observacionais como Assunto/estatística & dados numéricos , Projetos de Pesquisa/estatística & dados numéricos , Viés , Modificador do Efeito Epidemiológico , Humanos , Estudos Observacionais como Assunto/métodos , Análise de Regressão
14.
Rheumatology (Oxford) ; 58(9): 1526-1533, 2019 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-31236573

RESUMO

Social determinants of health play a crucial role in health and disease. In current times, it has become increasingly known that biological and non-biological factors are potentially linked and help to drive disease. For example, links between various comorbidities, both physical and mental illnesses, are known to be driven by social, environmental and economic determinants. This contributes to worse disease outcomes. This article discusses the concept of syndemics, which although well-described in some conditions, represents a novel concept in the context of rheumatic and musculoskeletal diseases. Written in the form of a viewpoint, the article focuses on a novel theoretical framework for studying inflammatory arthritis, based on a syndemic approach that takes into account the social context, biocultural disease interaction, and socio-economic characteristics of the setting. Syndemics involving inflammatory arthritis may be most likely in a social context involving limited access to health care, lack of physical activity and obesogenic diets, high rates of alcohol consumption, and high exposure to stressful life events.


Assuntos
Antirreumáticos/uso terapêutico , Artrite/tratamento farmacológico , Artrite/epidemiologia , Artrite/etiologia , Artrite/psicologia , Comorbidade , Depressão/epidemiologia , Predisposição Genética para Doença , Disparidades nos Níveis de Saúde , Humanos , Obesidade/epidemiologia , Fatores de Risco , Isolamento Social , Fatores Socioeconômicos , Sindemia , Falha de Tratamento
16.
Ann Rheum Dis ; 76(4): 712-715, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27797750

RESUMO

OBJECTIVES: To explore perceptions, barriers and patterns of social media (SM) use among rheumatology fellows and basic scientists. METHODS: An online survey was disseminated via Twitter, Facebook and by email to members of the Emerging European League Against Rheumatism Network. Questions focused on general demographics, frequency and types of SM use, reasons and barriers to SM use. RESULTS: Of 233 respondents (47 countries), 72% were aged 30-39 years, 66% female. 83% were active users of at least one SM platform and 71% were using SM professionally. The majority used SM for communicating with friends/colleagues (79%), news updates (76%), entertainment (69%), clinical (50%) and research (48%) updates. Facebook was the dominant platform used (91%). SM was reported to be used for information (81%); for expanding professional networks (76%); new resources (59%); learning new skills (47%) and establishing a professional online presence (46%). 30% of non-SM users justified not using SM due to lack of knowledge. CONCLUSIONS: There was a substantial use of SM by rheumatologists and basic scientists for social and professional reasons. The survey highlights a need for providing learning resources and increasing awareness of the use of SM. This could enhance communication, participation and collaborative work, enabling its more widespread use in a professional manner.


Assuntos
Pesquisa Biomédica , Comportamento de Busca de Informação , Reumatologia , Mídias Sociais/estatística & dados numéricos , Rede Social , Adulto , Bolsas de Estudo , Feminino , Humanos , Masculino , Inquéritos e Questionários
17.
Arthritis Res Ther ; 18(1): 251, 2016 10 28.
Artigo em Inglês | MEDLINE | ID: mdl-27793211

RESUMO

Patient-reported outcomes (PROs) reflect the patient's perspective and are used in rheumatoid arthritis (RA) routine clinical practice. Patient global assessment (PGA) is one of the most widely used PROs in RA practice and research and is included in several composite scores such as the 28-joint Disease Activity Score (DAS28). PGA is often assessed by a single question with a 0-10 or 0-100 response. The content can vary and relates either to global health (e.g., how is your health overall) or to disease activity (e.g., how active is your arthritis). The wordings used as anchors, i.e., for the score of 0, 10, or 100 according to the scale used, and the timing (i.e., this day or this week) also vary. The different possible ways of measuring PGA translate into variations in its interpretation and reporting and may impact on measures of disease activity and consequently achievement of treat-to-target goals. Furthermore, although PGA is associated with objective measures of disease activity, it is also associated with other aspects of health, such as psychological distress or comorbidities, which leads to situations of discordance between objective RA assessments and PGA. Focusing on the role of PGA, its use and interpretation in RA, this review explores its validity and correlations with other disease measures and its overall value for research and routine clinical practice.


Assuntos
Artrite Reumatoide , Psicometria , Autorrelato , Avaliação da Deficiência , Humanos , Psicometria/métodos , Psicometria/normas , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Resultado do Tratamento
18.
Clin Exp Rheumatol ; 34(5): 901-909, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27382923

RESUMO

OBJECTIVES: To characterise associations of fatigue with other variables within a multidimensional health assessment questionnaire (MDHAQ) in routine care of patients with different rheumatic diagnoses. METHODS: All patients complete MDHAQ, which includes fatigue on a 0-10 visual analogue scale (VAS), and routine assessment of patient index data (RAPID3), a composite of function, pain, and patient global. Physicians complete a RheuMetric checklist which includes 4 VAS for overall global status (DOCGL), inflammation, damage, and distress. Median score for fatigue and other MDHAQ and RheuMetric scores were compared in 4 diagnosis groups: rheumatoid arthritis (RA), osteoarthritis (OA), systemic lupus erythematosus (SLE), and fibromyalgia (FM), using a Kruskall-Wallis test. Associations of fatigue with other variables were analysed using Spearman correlations and multivariate regressions. RESULTS: 612 patients were included: 173 RA, 199 with OA, 146 with SLE, and 94 with FM. Median fatigue was significantly higher in FM (7) than in RA (4), OA (5), and SLE (5). Fatigue was correlated significantly with all other MDHAQ scores, at higher levels in RA and SLE versus OA and FM. Fatigue was correlated significantly with DOCGL in RA, OA, SLE, but not FM. In multivariate analyses, fatigue scores were explained independently by higher pain and symptom number in RA; lower age and higher symptom number in OA; only higher pain in SLE; and none of the variables in FM. CONCLUSIONS: Fatigue is common in rheumatic diseases and strongly associated with higher pain and number of symptoms. The MDHAQ provides a useful tool to assess fatigue in clinical settings.


Assuntos
Fadiga/diagnóstico , Indicadores Básicos de Saúde , Nível de Saúde , Medidas de Resultados Relatados pelo Paciente , Doenças Reumáticas/diagnóstico , Adulto , Idoso , Lista de Checagem , Chicago/epidemiologia , Efeitos Psicossociais da Doença , Estudos Transversais , Avaliação da Deficiência , Fadiga/epidemiologia , Fadiga/fisiopatologia , Fadiga/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Medição da Dor , Valor Preditivo dos Testes , Prevalência , Prognóstico , Qualidade de Vida , Estudos Retrospectivos , Doenças Reumáticas/epidemiologia , Doenças Reumáticas/fisiopatologia , Doenças Reumáticas/psicologia , Índice de Gravidade de Doença , Inquéritos e Questionários
19.
J Rheumatol ; 42(5): 794-8, 2015 May.
Artigo em Inglês | MEDLINE | ID: mdl-25834202

RESUMO

OBJECTIVES: To explore the change in direct medical costs associated with inflammatory polyarthritis (IP) 10 to 15 years after its onset. METHODS: Patients from the Norfolk Arthritis Register who had previously participated in a health economic study in 1999 were traced 10 years later and invited to participate in a further prospective questionnaire-based study. The study was designed to identify direct medical costs and changes in health status over a 6-month period using previously validated questionnaires as the primary source of data. RESULTS: A representative sample of 101 patients with IP from the 1999 cohort provided complete data over the 6-month period. The mean disease duration was 14 years (SD 2.1, median 13.6, interquartile range 12.6-15.4). The mean direct medical cost per patient over the 6-month period was £1496 for IP (inflated for 2013 prices). This compared with £582 (95% CI £355-£964) inflated to 2013 prices per patient with IP 10 years earlier in their disease. The increased cost was largely associated with the use of biologics in the rheumatoid arthritis subgroup of patients (51% of total costs incurred). Other direct cost components included primary care costs (11%), hospital outpatient (19%), day care (12%), and inpatient stay (4%). CONCLUSION: The direct healthcare costs associated with IP have more than doubled with increasing disease duration, largely as a result of the use of biologics. The results showed a shift in the direct health costs from inpatient to outpatient service use.


Assuntos
Antirreumáticos/economia , Artrite Reumatoide/economia , Produtos Biológicos/economia , Custos de Cuidados de Saúde , Adulto , Idoso , Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Produtos Biológicos/uso terapêutico , Inglaterra , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Sistema de Registros
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