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1.
Ann Rheum Dis ; 79(11): 1423-1431, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32873554

RESUMO

OBJECTIVE: As part of European League against Rheumatism (EULAR)/European Musculoskeletal Conditions Surveillance and Information Network, 20 user-focused standards of care (SoCs) for rheumatoid arthritis (RA) addressing 16 domains of care were developed. This study aimed to explore gaps in implementation of these SoCs across Europe. METHODS: Two cross-sectional surveys on the importance, level of and barriers (patients only) to implementation of each SoC (0-10, 10 highest) were designed to be conducted among patients and rheumatologists in 50 European countries. Care gaps were calculated as the difference between the actual and maximum possible score for implementation (ie, 10) multiplied by the care importance score, resulting in care gaps (0-100, maximal gap). Factors associated with the problematic care gaps (ie, gap≥30 and importance≥6 and implementation<6) and strong barriers (≥6) were further analysed in multilevel logistic regression models. RESULTS: Overall, 26 and 31 countries provided data from 1873 patients and 1131 rheumatologists, respectively. 19 out of 20 SoCs were problematic from the perspectives of more than 20% of patients, while this was true for only 10 SoCs for rheumatologists. Rheumatologists in countries with lower gross domestic product and non-European Union countries were more likely to report problematic gaps in 15 of 20 SoCs, while virtually no differences were observed among patients. Lack of relevance of some SoCs (71%) and limited time of professionals (66%) were the most frequent implementation barriers identified by patients. CONCLUSIONS: Many problematic gaps were reported across several essential aspects of RA care. More efforts need to be devoted to implementation of EULAR SoCs.

2.
J Health Serv Res Policy ; : 1355819620955223, 2020 Sep 21.
Artigo em Inglês | MEDLINE | ID: mdl-32957813

RESUMO

OBJECTIVE: To provide an overview of the challenges of conducting mixed methods research (MMR) in the context of health services research (HSR) and to discuss a case study example of the triangulation procedures used in a MMR study on task-shifting in the Netherlands. METHOD: A narrative literature review of publications between January 2000 and February 2020 on the use of mixed methods in the context of HSR and a description of the triangulation procedures in an HSR study with a MMR design on task shifting in the Netherlands. RESULTS: The narrative review identified eight challenges. Those related to publishing and appraisal of MMR within HSR were most frequently reported (e.g. 'lack of MMR examples', 'lack of recognition' and 'triangulation issues'). Also, practical problems for conducting MMR within HSR were identified (e.g. 'lack or resources', 'teamwork' and 'lack of quality criteria'). Methodological challenges (e.g. 'sampling' and 'paradigm wars') were less frequently reported as a challenge. CONCLUSION: While increasing in popularity, there remain a range of challenges for the design, conduct and reporting of MMR designs in HSR. Using a triangulation protocol can potentially help address some of these challenges.

3.
RMD Open ; 6(2)2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32938747

RESUMO

OBJECTIVES: To explore treatment outcomes preferred by patients with early rheumatoid arthritis (RA) and how these change throughout the early disease stage across three European countries. METHODS: A longitudinal, qualitative, multicentre study was conducted in Belgium, the Netherlands and Sweden. 80 patients with early RA were individually interviewed 3-9 months after treatment initiation and 51 of them participated again in either a focus group or an individual interview 12-21 months after treatment initiation. Data were first analysed by country, following the Qualitative Analysis Guide of Leuven (QUAGOL). Thereafter, a meta-synthesis, inspired by the principles of meta-ethnography and the QUAGOL, was performed, involving the local research teams. RESULTS: The meta-synthesis revealed 11 subthemes from which four main themes were identified: disease control, physical performance, self-accomplishment and well-being. 'A normal life despite RA' was an overarching patient-preferred outcome across countries. Belgian, Dutch and Swedish patients showed many similarities in terms of which outcomes they preferred throughout the early stage of RA. Some outcome preferences (eg, relief of fatigue and no side effects) developed differently over time across countries. CONCLUSIONS: This study on patient-preferred outcomes in early RA revealed that patients essentially want to live a normal life despite RA. Our findings help to understand what really matters to patients and provide specific insights into the early stage of RA, which should be addressed by clinicians of different disciplines from the start of treatment onwards.

4.
Ann Rheum Dis ; 79(6): 685-699, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31969328

RESUMO

OBJECTIVES: To provide an update of the European League Against Rheumatism (EULAR) rheumatoid arthritis (RA) management recommendations to account for the most recent developments in the field. METHODS: An international task force considered new evidence supporting or contradicting previous recommendations and novel therapies and strategic insights based on two systematic literature searches on efficacy and safety of disease-modifying antirheumatic drugs (DMARDs) since the last update (2016) until 2019. A predefined voting process was applied, current levels of evidence and strengths of recommendation were assigned and participants ultimately voted independently on their level of agreement with each of the items. RESULTS: The task force agreed on 5 overarching principles and 12 recommendations concerning use of conventional synthetic (cs) DMARDs (methotrexate (MTX), leflunomide, sulfasalazine); glucocorticoids (GCs); biological (b) DMARDs (tumour necrosis factor inhibitors (adalimumab, certolizumab pegol, etanercept, golimumab, infliximab), abatacept, rituximab, tocilizumab, sarilumab and biosimilar (bs) DMARDs) and targeted synthetic (ts) DMARDs (the Janus kinase (JAK) inhibitors tofacitinib, baricitinib, filgotinib, upadacitinib). Guidance on monotherapy, combination therapy, treatment strategies (treat-to-target) and tapering on sustained clinical remission is provided. Cost and sequencing of b/tsDMARDs are addressed. Initially, MTX plus GCs and upon insufficient response to this therapy within 3 to 6 months, stratification according to risk factors is recommended. With poor prognostic factors (presence of autoantibodies, high disease activity, early erosions or failure of two csDMARDs), any bDMARD or JAK inhibitor should be added to the csDMARD. If this fails, any other bDMARD (from another or the same class) or tsDMARD is recommended. On sustained remission, DMARDs may be tapered, but not be stopped. Levels of evidence and levels of agreement were mostly high. CONCLUSIONS: These updated EULAR recommendations provide consensus on the management of RA with respect to benefit, safety, preferences and cost.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Produtos Biológicos/uso terapêutico , Sociedades Médicas , Medicamentos Sintéticos/uso terapêutico , Antirreumáticos/economia , Produtos Biológicos/economia , Consenso , Quimioterapia Combinada , Europa (Continente) , Humanos , Inibidores de Janus Quinases/uso terapêutico , Medicamentos Sintéticos/economia , Revisões Sistemáticas como Assunto , Fator de Necrose Tumoral alfa/antagonistas & inibidores
5.
Ann Rheum Dis ; 79(1): 61-68, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31300458

RESUMO

To update the European League Against Rheumatism (EULAR) recommendations for the role of the nurse in the management of chronic inflammatory arthritis (CIA) using the most up to date evidence. The EULAR standardised operating procedures were followed. A task force of rheumatologists, health professionals and patients, representing 17 European countries updated the recommendations, based on a systematic literature review and expert consensus. Higher level of evidence and new insights into nursing care for patients with CIA were added to the recommendation. Level of agreement was obtained by email voting. The search identified 2609 records, of which 51 (41 papers, 10 abstracts), mostly on rheumatoid arthritis, were included. Based on consensus, the task force formulated three overarching principles and eight recommendations. One recommendation remained unchanged, six were reworded, two were merged and one was reformulated as an overarching principle. Two additional overarching principles were formulated. The overarching principles emphasise the nurse's role as part of a healthcare team, describe the importance of providing evidence-based care and endorse shared decision-making in the nursing consultation with the patient. The recommendations cover the contribution of rheumatology nursing in needs-based patient education, satisfaction with care, timely access to care, disease management, efficiency of care, psychosocial support and the promotion of self-management. The level of agreement among task force members was high (mean 9.7, range 9.6-10.0). The updated recommendations encompass three overarching principles and eight evidence-based and expert opinion-based recommendations for the role of the nurse in the management of CIA.


Assuntos
Artrite Psoriásica/enfermagem , Artrite Reumatoide/enfermagem , Papel do Profissional de Enfermagem , Reumatologia , Espondilite Anquilosante/enfermagem , Artrite/enfermagem , Educação Continuada em Enfermagem , Acesso aos Serviços de Saúde , Humanos , Educação de Pacientes como Assunto , Satisfação do Paciente , Especialidades de Enfermagem , Espondiloartropatias/enfermagem , Telemedicina
6.
Health Policy ; 123(11): 1076-1082, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31443982

RESUMO

Despite recent studies confirming task shifting is both safe and effective, its implementation has proven difficult in practice. So too in the Netherlands, where legal barriers enforcing strict professional boundaries have historically limited task shifting. In recent years, Dutch policymakers have experimented with temporary expanded scopes of practice (ESP) for several professional groups, with the aim to facilitate task shifting in order to increase the overall effectiveness and efficiency of health care. The Clinical Technologist (CT), is an emerging new professional group that has received such a temporary ESP pending an evaluation. This paper reports the qualitative findings of the implementation process of providing CTs with an temporary ESP. Data collection consisted of 69 semi-structured interviews, 3 focus group interviews and 9 participant observations, conducted between September 2015 and October 2017. Analysis was conducted through an 'editing analysis style' whereby data were categorized using the conceptual framework of Grol & Wensing's implementation model. The study suggests that social features are of great importance when implementing task shifting. In situations with few social barriers, organizational and administrative barriers seem to be less dominant, thereby expediting the overall implementation process. Consequently, we recommend that policymakers should prioritize social features over organizational features when implementing task shifting.


Assuntos
Atitude do Pessoal de Saúde , Política de Saúde , Pessoal de Laboratório Médico , Âmbito da Prática , Adulto , Fatores Etários , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoal de Laboratório Médico/provisão & distribução , Pessoal de Laboratório Médico/tendências , Países Baixos , Pesquisa Qualitativa
7.
RMD Open ; 5(1): e000860, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31168405

RESUMO

Objective: To develop and test the usability and acceptability of a disease-specific integrated electronic health (eHealth) system for spondyloarthritis (SpA) in the Netherlands ('SpA-Net'). Methods: SpA-Net was developed in four phases. First, content and design were discussed with experts on SpA and patients. Second, the database, electronic medical record (EMR) and quality management system were developed. Third, multiple rounds of testing were performed. Fourth, the eHealth system was implemented in practice and feasibility was tested among patients through semistructured focus interviews (n=16 patients) and among care providers through feedback meetings (n=11 rheumatologists/fellows and 5 nurses). Results: After completion of the first three steps of development in 2015, SpA-Net was implemented in 2016. All patients included have a clinical diagnosis of SpA. Information on domains relevant to clinical record-keeping is prospectively collected at routine outpatient consultations and readily available to care providers, presented in a clear dashboard. Patients complete online questionnaires prior to outpatient visits. In February 2019, 1069 patients were enrolled (mean [SD] age 54.9 [14.1] years, 52.4% men). Patients interviewed (n=16) considered SpA-Net an accessible system that was beneficial to disease insight and patient-physician communication, and had additional value to current care. Care providers appreciated the additional information for (preparing) consultations. Barriers were the initial time required to adopt the EMR and the quantity of data entry. Conclusion: SpA-Net enables monitoring of patients with SpA and real-life data collection, and could help improve knowledge and optimise communication between patients and care providers. Both considered SpA-Net a valuable addition to current care. Trial registration number: NTR6740.


Assuntos
Prestação Integrada de Cuidados de Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Espondilartrite/epidemiologia , Telemedicina , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Vigilância em Saúde Pública , Qualidade da Assistência à Saúde , Espondilartrite/diagnóstico , Espondilartrite/terapia , Inquéritos e Questionários , Telemedicina/métodos , Telemedicina/normas
8.
BMJ Open ; 9(3): e023606, 2019 03 27.
Artigo em Inglês | MEDLINE | ID: mdl-30918031

RESUMO

INTRODUCTION: Including the patient perspective is important to achieve optimal outcomes in the treatment of rheumatoid arthritis (RA). Ample qualitative studies exist on patient outcomes in RA. A Belgian study recently unravelled what matters most to patients throughout the overwhelming and rapidly evolving early stage of RA. The present study, European Qualitative research project on Patient-preferred outcomes in Early Rheumatoid Arthritis (EQPERA) was created to contribute to a more universal understanding of patient-preferred health and treatment outcomes by integrating the perspectives of patients with early RA from three European countries. METHODS AND ANALYSIS: In EQPERA, a qualitative, explorative, longitudinal study will be implemented in The Netherlands and Sweden, parallel to the methods applied in the previously conducted Belgian study. In each country, a purposive sample of patients with early RA will be individually interviewed 3-6 months after start of the initial RA treatment and subsequently, the same participants will be invited to take part in a focus group 12-18 months after RA treatment initiation. Data collection and analysis will be independently conducted by the local research teams in their native language. A meta-analysis of the local findings will be performed to explore and describe similarities, differences and patterns across countries. ETHICS AND DISSEMINATION: Ethics approval was granted by the responsible local ethics committees. EQPERA follows the recommendations of the Declaration of Helsinki. Two main papers are foreseen (apart from the data reporting on the local findings) for peer-reviewed publication.


Assuntos
Artrite Reumatoide/terapia , Preferência do Paciente , Projetos de Pesquisa , Europa (Continente) , Grupos Focais , Humanos , Estudos Longitudinais , Estudos Multicêntricos como Assunto , Multilinguismo , Pesquisa Qualitativa , Resultado do Tratamento
9.
BMJ Open ; 8(6): e019962, 2018 06 22.
Artigo em Inglês | MEDLINE | ID: mdl-29934382

RESUMO

OBJECTIVE: To evaluate the effects of granting legal full practice authority (FPA) to nurse practitioners (NP) and physician assistants (PA) regarding the performance of specified reserved medical procedures and to support governmental decision-making. DESIGN: Nationwide mixed methods design with triangulation of quantitative (Pre-post test design) and qualitative data (expert interviews and focus groups). METHODS: Surveys focused on the performance of the procedures (monthly number, authorisation mode, consultations and procedural time) and legal cross-compliance requirements (adherence with protocols, competence). Interviews focused on competence, knowledge, skills, responsibilities, routine behaviour, NP/PA role, acceptance, organisational structure, collaboration, consultation, NP/PA positioning, adherence with protocols and resources. Data collection took place between 2011 and 2015. RESULTS: Quantitative data included 1251 NPs, 798 PAs and 504 physicians. Besides, expert interviews with 33 healthcare providers and 28 key stakeholders, and 5 focus groups (31 healthcare providers) were held.After obtaining FPA, the proportion of NPs and PAs performing reserved procedures increased from 77% to 85% and from 86% to 93%, respectively; the proportion of procedures performed on own authority increased from 63% to 76% for NPs and from 67% to 71% for PAs. The mean number of monthly contacts between NPs/PAs and physicians about procedures decreased (from 81 to 49 and from 107 to 54, respectively), as did the mean duration in minutes (from 9.9 to 8.6 and from 8.8 to 7.4, respectively). Utilisation of FPA was dependent on the setting, as scepticism of physicians and medical boards hampered full implementation. Legal cross-compliance requirements were mostly fulfilled. CONCLUSIONS: Informal practice was legalised. The opportunities to independently perform catheterisations, injections, prescribing, punctures and small surgical procedures were highly used. Care processes were organised more efficiently, services were performed by the most appropriate healthcare provider and conditions were met. This led to the recommendation to continue with FPA.


Assuntos
Competência Clínica , Profissionais de Enfermagem/legislação & jurisprudência , Assistentes Médicos/legislação & jurisprudência , Reforma dos Serviços de Saúde , Humanos , Países Baixos , Profissionais de Enfermagem/provisão & distribução , Assistentes Médicos/provisão & distribução , Garantia da Qualidade dos Cuidados de Saúde/métodos
10.
Ann Rheum Dis ; 77(4): 476-479, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29301783

RESUMO

Personalised medicine, new discoveries and studies on rare exposures or outcomes require large samples that are increasingly difficult for any single investigator to obtain. Collaborative work is limited by heterogeneities, both what is being collected and how it is defined. To develop a core set for data collection in rheumatoid arthritis (RA) research which (1) allows harmonisation of data collection in future observational studies, (2) acts as a common data model against which existing databases can be mapped and (3) serves as a template for standardised data collection in routine clinical practice to support generation of research-quality data. A multistep, international multistakeholder consensus process was carried out involving voting via online surveys and two face-to-face meetings. A core set of 21 items ('what to collect') and their instruments ('how to collect') was agreed: age, gender, disease duration, diagnosis of RA, body mass index, smoking, swollen/tender joints, patient/evaluator global, pain, quality of life, function, composite scores, acute phase reactants, serology, structural damage, treatment and comorbidities. The core set should facilitate collaborative research, allow for comparisons across studies and harmonise future data from clinical practice via electronic medical record systems.


Assuntos
Artrite Reumatoide , Coleta de Dados/normas , Estudos Observacionais como Assunto/normas , Consenso , Coleta de Dados/métodos , Humanos , Estudos Observacionais como Assunto/métodos
11.
Clin Exp Rheumatol ; 36(2): 275-283, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29303700

RESUMO

OBJECTIVES: The eumusc.net standards of care (SOCs) for rheumatoid arthritis (RA) aimed to improve quality of care across Europe. This study investigated importance and implementation of each standard according to patients and health care professionals (HCPs) in the Netherlands and identified barriers towards implementation. METHODS: Dutch patients, rheumatologists and rheumatology nurses rated importance and implementation (0-10 numeric rating scale (NRS); 10=most important/best implemented) for each of the 20 SOCs. A care gap, adjusted for importance, was calculated: (100=highest gap). Statistical differences between a) patients and HCPs and b) subgroups of patients (demographics, health) were tested. Additionally, patients indicated agreement (0-10) with 6 implementation barriers. RESULTS: 386 patients and 91 HCPs were included. Both ranked adequate disease modifying anti-rheumatic drug treatment (9.3(SD1.2), 9.2(SD0.8)), access to care in emergencies (9.2(SD1.2), 9.2(SD1.0)) and regular re-appraisal when treatment fails (9.2(SD1.3), 9.0(SD1.0)) the most important SOCs, and these were among the best implemented (NRS≥8.5) SOCs. After accounting for applicability, patients and HCP identified care gaps for early diagnosis (25.5(SD32.0), 22.3(SD16.3)), availability of a treatment plan (25.1(SD22.7), 25.7(SD18.5)) and patients also for a regular schedule of assessment of disease (28.6(SD25.5)).Patients with poorer health or higher education scored systematically lower on care received while sharing similar priorities. Patients and HCPs considered limited reimbursement of specific health services a main barrier for implementation and patients additionally identified limited time of physicians. CONCLUSIONS: Dutch patients and HCPs overall agreed on priorities in care and found relevant SOCs well implemented. However, suggestions for improvement were raised especially by patients with poorer health and/or higher education.


Assuntos
Artrite Reumatoide/tratamento farmacológico , Padrão de Cuidado , Adulto , Idoso , Estudos Transversais , Feminino , Pessoal de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos
12.
Int J Nurs Stud ; 77: 115-129, 2018 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-29080437

RESUMO

BACKGROUND: Although rheumatology nursing has been shown to be effective in managing patients with rheumatoid arthritis, patient outcomes sensitive to nursing interventions (nursing sensitive outcomes) have not been systematically studied. OBJECTIVES: The objective of this study was to identify and delineate relevant patient outcomes measured in studies that reported nursing interventions in patients with rheumatoid arthritis. DESIGN: A systematic search was conducted from 1990 to 2016. Inclusion criteria were (i) patients with rheumatoid arthritis, (ii) adult population age ≥16years, (iii) nurse as part of the care team or intervention delivery, (iv) primary research only, (v) English language, and (vi) quantitative studies with nursing sensitive outcomes. DATA SOURCES: Medline, CINAHL, Ovid nursing, Cochrane library and PsycINFO databases were searched for relevant studies. REVIEW METHODS: Using the predetermined inclusion/exclusion criteria, nine reviewers working in pairs assessed the eligibility of the identified studies based on titles and abstracts. Papers meeting the inclusion criteria were retrieved and full texts were further assessed. Critical Appraisal Skills Programme tools were used to assess the quality of the included studies. Data on nursing sensitive outcomes were extracted independently by two reviewers. The Outcome Measures in Rheumatology comprehensive conceptual framework for health was used to contextualise and present findings. RESULTS: Of the 820 articles retrieved, 7 randomised controlled trials and 3 observational studies met the inclusion criteria. Seventeen nursing sensitive outcomes were identified (disease activity, clinical effects, pain, early morning stiffness duration, fatigue, patient safety issues, function, knowledge, patient satisfaction, confidence in care received, mental health status, self-efficacy, patient attitude/perception of ability to control arthritis, quality of life, health utility, health care resources, death). These fitted into 10 health intervention domains in keeping with the pre-specified conceptual framework for health: disease status, effectiveness, safety, function, knowledge, satisfaction, psychological status, quality of life, cost, death. A total of 59 measurement instruments were identified comprising patient reported outcome measures (n=31), and biologic measures and reports (n=28). CONCLUSIONS: This review is notable in that it is the first to have identified, and reported, a set of multidimensional outcome measures that are sensitive to nursing interventions in rheumatology specifically. Further research is required to determine a core set of outcomes to be used in all rheumatology nursing intervention studies.


Assuntos
Artrite Reumatoide/enfermagem , Avaliação de Resultados em Cuidados de Saúde , Adulto , Humanos , Qualidade de Vida
13.
Ann Rheum Dis ; 76(6): 960-977, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28264816

RESUMO

Recent insights in rheumatoid arthritis (RA) necessitated updating the European League Against Rheumatism (EULAR) RA management recommendations. A large international Task Force based decisions on evidence from 3 systematic literature reviews, developing 4 overarching principles and 12 recommendations (vs 3 and 14, respectively, in 2013). The recommendations address conventional synthetic (cs) disease-modifying antirheumatic drugs (DMARDs) (methotrexate (MTX), leflunomide, sulfasalazine); glucocorticoids (GC); biological (b) DMARDs (tumour necrosis factor (TNF)-inhibitors (adalimumab, certolizumab pegol, etanercept, golimumab, infliximab), abatacept, rituximab, tocilizumab, clazakizumab, sarilumab and sirukumab and biosimilar (bs) DMARDs) and targeted synthetic (ts) DMARDs (Janus kinase (Jak) inhibitors tofacitinib, baricitinib). Monotherapy, combination therapy, treatment strategies (treat-to-target) and the targets of sustained clinical remission (as defined by the American College of Rheumatology-(ACR)-EULAR Boolean or index criteria) or low disease activity are discussed. Cost aspects were taken into consideration. As first strategy, the Task Force recommends MTX (rapid escalation to 25 mg/week) plus short-term GC, aiming at >50% improvement within 3 and target attainment within 6 months. If this fails stratification is recommended. Without unfavourable prognostic markers, switching to-or adding-another csDMARDs (plus short-term GC) is suggested. In the presence of unfavourable prognostic markers (autoantibodies, high disease activity, early erosions, failure of 2 csDMARDs), any bDMARD (current practice) or Jak-inhibitor should be added to the csDMARD. If this fails, any other bDMARD or tsDMARD is recommended. If a patient is in sustained remission, bDMARDs can be tapered. For each recommendation, levels of evidence and Task Force agreement are provided, both mostly very high. These recommendations intend informing rheumatologists, patients, national rheumatology societies, hospital officials, social security agencies and regulators about EULAR's most recent consensus on the management of RA, aimed at attaining best outcomes with current therapies.


Assuntos
Anticorpos Monoclonais/uso terapêutico , Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Inibidores de Proteínas Quinases/uso terapêutico , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Substituição de Medicamentos , Quimioterapia Combinada , Glucocorticoides/uso terapêutico , Humanos , Janus Quinases/antagonistas & inibidores , Metotrexato/uso terapêutico , Participação do Paciente , Fatores de Tempo
14.
Mod Rheumatol ; 27(5): 886-893, 2017 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-27846750

RESUMO

OBJECTIVE: We seek to evaluate the opinions of nurses and doctors in Japan regarding EULAR recommendations for nurses' roles in the management of chronic inflammatory arthritis. METHODS: This is a cross-sectional survey within Japan. We randomly selected nurses and doctors engaged in consultation of patients with rheumatoid arthritis (RA) and assessed their agreement and opinions on the feasibility of implementing EULAR recommendations, including potential barriers. RESULTS: 431 nurses and 128 doctors completed the questionnaire. For both nurses and doctors, levels of feasibility showed statistically significant lower results compared with those of agreement for all items. When compared between nurses and doctors, agreement showed no statistically significant differences, while nurses' answers were statistically significant lower for feasibility. Insufficient time, staff and knowledge, lack of established procedures and facilities, and lack of an education system for nurses were cited as barriers to the feasibility of implementing EULAR recommendations. CONCLUSIONS: This is the first survey within Japan evaluating opinions regarding EULAR recommendations for nurses' roles. We found that while agreement was high, feasibility was generally believed to be low. We recommend further research and collaboration between medical professionals in order to implement these recommendations in Japan.


Assuntos
Artrite/enfermagem , Atitude do Pessoal de Saúde , Adulto , Estudos Transversais , Feminino , Humanos , Japão , Masculino , Pessoa de Meia-Idade , Papel do Profissional de Enfermagem , Cuidados de Enfermagem/psicologia , Administração dos Cuidados ao Paciente/métodos , Médicos/psicologia , Inquéritos e Questionários
15.
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
16.
BMC Med Ethics ; 17(1): 42, 2016 07 16.
Artigo em Inglês | MEDLINE | ID: mdl-27422433

RESUMO

BACKGROUND: Before participation in medical research an informed consent must be obtained. This study investigates whether the readability of patient information and consent documents (PICDs) corresponds to the average educational level of participants in rheumatological studies in the Netherlands, Denmark, and Norway. METHODS: 24 PICDs from studies were collected and readability was assessed independently using the Gunning's Fog Index (FOG) and Simple Measure of Gobbledygook (SMOG) grading. RESULTS: The mean score for the FOG and SMOG grades were 14.2 (9.0-19.0) and 14.2 (12-17) respectively. The mean FOG and SMOG grades were 12.7 and 13.3 in the Dutch studies, 15.0 and 14.9 in the Danish studies, and 14.6 and 14.3 in the Norwegian studies, respectively. Out of the 2865 participants, more than 57 % had a lower educational level than the highest readability score calculated in the individual study. CONCLUSIONS: As the readability level of the PICDs did not match the participants' educational level, consent may not have been valid, as the participants may have had a limited understanding of what they agreed to participate in. There should be more focus on the readability of PICDs. National guidelines for how to write clear and unambiguous PICDs in simple and easily understandable language could increase the focus on the readability of PICD.


Assuntos
Pesquisa Biomédica/ética , Compreensão , Termos de Consentimento , Consentimento Livre e Esclarecido/ética , Leitura , Reumatologia , Dinamarca , Escolaridade , Ética em Pesquisa , Letramento em Saúde , Humanos , Idioma , Alfabetização , Países Baixos , Noruega , Seleção de Pacientes , Redação
17.
Ann Rheum Dis ; 75(6): 965-73, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26984008

RESUMO

In chronic inflammatory rheumatic diseases, comorbidities such as cardiovascular diseases and infections are suboptimally prevented, screened for and managed. The objective of this European League Against Rheumatism (EULAR) initiative was to propose points to consider to collect comorbidities in patients with chronic inflammatory rheumatic diseases. We also aimed to develop a pragmatic reporting form to foster the implementation of the points to consider. In accordance with the EULAR Standardised Operating Procedures, the process comprised (1) a systematic literature review of existing recommendations on reporting, screening for or preventing six selected comorbidities: ischaemic cardiovascular diseases, malignancies, infections, gastrointestinal diseases, osteoporosis and depression and (2) a consensus process involving 21 experts (ie, rheumatologists, patients, health professionals). Recommendations on how to treat the comorbidities were not included in the document as they vary across countries. The literature review retrieved 42 articles, most of which were recommendations for reporting or screening for comorbidities in the general population. The consensus process led to three overarching principles and 15 points to consider, related to the six comorbidities, with three sections: (1) reporting (ie, occurrence of the comorbidity and current treatments); (2) screening for disease (eg, mammography) or for risk factors (eg, smoking) and (3) prevention (eg, vaccination). A reporting form (93 questions) corresponding to a practical application of the points to consider was developed. Using an evidence-based approach followed by expert consensus, this EULAR initiative aims to improve the reporting and prevention of comorbidities in chronic inflammatory rheumatic diseases. Next steps include dissemination and implementation.


Assuntos
Comorbidade , Medicina Baseada em Evidências/métodos , Doenças Reumáticas/complicações , Medição de Risco/métodos , Consenso , Depressão/prevenção & controle , Gastroenteropatias/prevenção & controle , Humanos , Isquemia/prevenção & controle , Neoplasias/prevenção & controle , Osteoporose/prevenção & controle , Fatores de Risco
18.
Clin Rheumatol ; 35(5): 1307-15, 2016 May.
Artigo em Inglês | MEDLINE | ID: mdl-26409883

RESUMO

The purpose of this study is to understand the course of costs over a 2-year period in a cohort of recently diagnosed fibromyalgia (FM) patients receiving different treatment strategies. Following the diagnosis, patients were randomly assigned to a multidisciplinary programme (MD), aerobic exercise (AE) or usual care (UC) without being aware of alternative interventions. Time between diagnosis and start of treatment varied between patients. Resource utilisation, health care costs and costs for patients and families were collected through cost diaries. Mixed linear model analyses (MLM) examined the course of costs over time. Linear regression was used to explore predictors of health care costs in the post-intervention period. Two hundred three participants, 90 % women, mean (SD) age 41.7 (9.8) years, were included in the cohort. Intervention costs per patient varied from €864 to 1392 for MD and were €121 for AE. Health care costs (excluding intervention costs) decreased after diagnosis, but before the intervention in each group, and increased again afterwards to the level close to the diagnostic phase. In contrast, patient and family costs slightly increased over time in all groups without initial decrease immediately after diagnosis. Annualised health care costs post-intervention varied between €1872 and 2310 per patient and were predicted by worse functioning and high health care costs at diagnosis. In patients with FM, health care costs decreased following the diagnosis by a rheumatologist. Offering patients a specific intervention after diagnosis incurred substantial costs while having only marginal effects on costs.


Assuntos
Terapia por Exercício/economia , Fibromialgia/terapia , Custos de Cuidados de Saúde , Recursos em Saúde/estatística & dados numéricos , Adulto , Análise Custo-Benefício , Feminino , Fibromialgia/economia , Recursos em Saúde/economia , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida
20.
Musculoskeletal Care ; 14(3): 133-51, 2016 09.
Artigo em Inglês | MEDLINE | ID: mdl-26549188

RESUMO

INTRODUCTION: Cardiovascular risk (CVR) assessment and management in patients with inflammatory arthritis (IA) is recommended but European nurses' involvement in this role has not been well studied. AIM: The aim of the present study was to explore European nurses' role in assessing and managing CVR, in order to suggest topics for practice development and research in this area regarding persons with IA. METHODS: We searched Embase, Cinahl, Cochrane, PsycInfo and PubMed databases and included European articles from the past ten years if they described how nurses assess and/or manage CVR. In addition to the systematic review, we provided case studies from five different countries to illustrate national guidelines and nurses' role regarding CVR assessment and management in patients with IA. RESULTS: Thirty-three articles were included. We found that trained nurses were undertaking CVR assessment and management in different settings and groups of patients. The assessments include blood pressure, body mass index, waist circumference, glucose and lipid-profile, adherence to medication and behavioural risk factors (unhealthy diet, physical inactivity, alcohol and smoking). Different tools were used to calculate patients' risk. Risk management differed from brief advice to long-term follow-up. Nurses tended to take a holistic and individually tailored approach. Clinical examples of inclusion of rheumatology nurses in these tasks were scarce. CONCLUSION: Nurses undertake CVR assessment, communication and management in different types of patients. This is considered to be a highly relevant task for rheumatology nursing, especially in patients with IA. Further studies are needed to assess patients' perspective, effectiveness and cost-effectiveness of nurse-led CVR. Copyright © 2015 John Wiley & Sons, Ltd.


Assuntos
Artrite/complicações , Doenças Cardiovasculares/etiologia , Papel do Profissional de Enfermagem , Artrite/enfermagem , Europa (Continente) , Humanos , Medição de Risco
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