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1.
Clin Exp Rheumatol ; 38(6): 1056-1067, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33253107

RESUMO

OBJECTIVES: Despite availability of efficacious treatments, unmet needs still exist, preventing optimal and comprehensive management of rheumatoid arthritis (RA). Evolving the management of RA (eRA) is a European-wide educational initiative aiming to support improved patient care through practical and educational tools addressing specific unmet needs. METHODS: A multidisciplinary Steering Committee (17 members, 12 countries) identified unmet needs within the management of RA and prioritised those with the greatest impact on patient outcomes. Practical educational tools addressing priority needs were then developed for dissemination and implementation by the rheumatology community across Europe. RESULTS: Five areas of priority need were identified: increasing early recognition of RA and treatment initiation; treating RA to target; optimal, holistic approach to selection of treatment strategy, including shared decision-making; improving identification and management of comorbidities; and non-pharmacological patient management. A suite of 14 eRA tools included educational slides, best-practice guidance, self­assessment questionnaires, clinical checklists, a multidisciplinary team training exercise, an interactive patient infographic, and case scenarios. By April 2020, rheumatology professionals in 17 countries had been actively engaged in the eRA programme; in 11 countries, eRA tools were selected by national leaders in rheumatology and translated for local dissemination. A web platform, with country-specific pages, was developed to support access to the translated tools (https://www.evolvingthemanagementofra.com/). CONCLUSIONS: The eRA programme supports comprehensive management of RA across Europe through development and dissemination of practical educational tools. The eRA tools address priority needs and are available free of charge to the rheumatology community.

2.
Artigo em Inglês | MEDLINE | ID: mdl-33026713

RESUMO

OBJECTIVES: To identify and describe health literacy profiles of patients with rheumatic diseases and explore whether the identified health literacy profiles can be generalized to a broader rheumatology context. METHODS: Patients with rheumatoid arthritis, spondyloarthritis and gout from three hospitals in different regions in the Netherlands completed the Health Literacy Questionnaire (HLQ). Hierarchical cluster analysis was used to identify patients' health literacy profiles based on nine HLQ domains. A multinomial regression model with the identified health literacy profiles as the dependent variable was fitted to assess whether patients with a given disease type or attending a given hospital were more likely to belong to a specific profile. RESULTS: Among 895 participating patients, lowest mean HLQ domain scores (indicating most difficulty) were found for "Critical appraisal", "Navigating the health system" and "Finding good health information". The ten identified profiles revealed substantial diversity in combinations of strengths and weaknesses. While 42% of patients scored moderate to high on all nine domains (profiles 1 and 3), another 42% of patients (profiles 2, 4, 5 and 6) clearly struggled with one or several aspects of health literacy. Notably, 16% (profiles 7 to 10) exhibited difficulty across a majority of health literacy domains. The probability of belonging to one of the profiles was independent of hospital attended or type of rheumatic disease. CONCLUSION: Ten distinct health literacy profiles were identified among patients with rheumatic diseases, independent of disease type and treating hospital. These profiles can be used to facilitate health literacy intervention development in rheumatology.

3.
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.

4.
Rheumatol Adv Pract ; 4(2): rkaa012, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32704614

RESUMO

Objective: The aim was to develop two disease- and treatment-related knowledge about RA (DataK-RA) short forms using item response theory-based linear optimal test design. Methods: We used the open source Excel add-in solver to program a linear optimization algorithm to develop two short forms from the DataK-RA item bank. The algorithm was instructed to optimize precision (i.e. reliability) of the scores for both short forms, subject to a number of constraints that served to ensure that each short form would include unique items and that the short forms would have similar psychometric properties. Agreement among item response theory scores obtained from the different short forms was assessed using the Bland-Altman method and Student's paired t-test. Construct validity and relative efficiency of the short forms was evaluated by relating the score to age, sex and educational attainment. Results: Two short forms were derived from the DataK-RA item bank that satisfied all content constraints. Both short forms included 15 unique items and yielded reliable scores (r > 0.70), with low ceiling and floor effects. The short forms yielded statistically indistinguishable mean scores according to Student's paired t-test and Bland-Altman analysis. Scores on short forms 1 and 2 were associated with age, sex and educational attainment to a similar extent. Conclusion: In this study, we developed two DataK-RA short forms with unique items, yet similar psychometric properties, that can be used to assess patients pre- and post-test interventions aimed at improving disease-related knowledge in RA patients.

5.
Clinicoecon Outcomes Res ; 12: 213-222, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32346301

RESUMO

Background: Baricitinib is a janus kinase (JAK1/JAK2) inhibitor developed for the treatment of patients suffering from rheumatoid arthritis (RA). Treating RA to the target of remission is current common practice. Cost-effectiveness of different treat-to-target (T2T) strategies, especially ones including new treatments is important for development and preference policy for treatment centers. European League Against Rheumatism (EULAR) and American College of Rheumatology (ACR) guidelines are currently unclear about preference between a JAK1/JAK2 versus a biological disease-modifying antirheumatic drug (bDMARD). Objective: The main goal of this paper was to evaluate the cost-effectiveness of baricitinib versus first biological for methotrexate inadequate responders in a T2T strategy using a Markov model that incorporates hospital costs as well as societal costs. Costs and utilities over five years were compared between the two strategies. Methods: A Monte Carlo simulation model was developed to conduct cost-utility analysis from the societal perspective over 5 years. Health states were based on the DAS28-erythrocyte sedimentation rate (ESR) categories. Effectiveness of baricitinib was retrieved from randomized controlled trials. Effectiveness of all other treatments, health state utilities, medical costs, and productivity loss were retrieved from the Dutch RhEumatoid Arthritis Monitoring (DREAM) cohorts. Annual discount rates of 1.5% for utility and 4% for costs were used. Probabilistic sensitivity analysis was employed to incorporate uncertainty and assess robustness of the results. Results: Probabilistic sensitivity analysis results showed the baricitinib strategy yielded lower costs and higher utility over a 5-year period. Scenario analyses showed the baricitinib strategy to be cost-effective in both the moderate and severe RA populations. Conclusion: Results suggest that the use of a JAK1/JAK2 inhibitor instead of a bDMARD in a T2T approach is cost-effective in csDMARD refractory RA patients.

6.
Artigo em Inglês | MEDLINE | ID: mdl-32286729

RESUMO

OBJECTIVES: As young people enter adulthood, the interchangeable use of child and adult outcome measures may inaccurately capture changes over time. This study aimed to use item response theory (IRT) to model a continuous score for functional ability that can be used no matter which questionnaire is completed. METHODS: Adolescents (11-17 yrs) in the UK Childhood Arthritis Prospective Study self-completed an adolescent-Childhood Health Assessment Questionnaire (A-CHAQ) and a Health Assessment Questionnaire (HAQ). Their parents completed the proxy-CHAQ (P-CHAQ). Those with at least two simultaneously completed questionnaires at initial presentation or one year were included. Psychometric properties of item responses within each questionnaire were tested using Mokken analyses to assess the applicability of IRT modelling. A previously developed IRT model from the Pharmachild-NL registry was validated in CAPS participants. Agreement and correlations between IRT-scaled functional ability scores were tested using intra-class correlations and Wilcoxon signed-ranked tests. RESULTS: In 303 adolescents, median age at diagnosis was 13 years and 61% were female. CHAQ scores consistently exceeded HAQ scores. Mokken analyses demonstrated high scalability, monotonicity and that each questionnaire yielded reliable scores. There was little difference in item response characteristics between adolescents enrolled to CAPS and Pharmachild (maximum item residual 0.08). Significant differences were no longer evident between IRT-scaled HAQ and CHAQ scores. CONCLUSION: IRT modelling allows the direct comparison of function scores regardless of different questionnaires being completed by different people over time. This facilitates ongoing assessment of function as adolescents transfer from paediatric clinics to adult services.

7.
Clin Rheumatol ; 39(4): 1131-1139, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31997083

RESUMO

To re-evaluate the adherence to clinical practice guidelines recommended disease activity-based management of rheumatoid arthritis (RA) in daily clinical practice, among Dutch rheumatologists in the past decade. In 2007, disease activity was measured in only 16% of outpatient visits. All rheumatologists that participated in the 2007 study were invited to re-enter our study in 2016/2017. If necessary, data were supplemented with data from other rheumatologists. For all 26 rheumatologists who agreed to participate in our study, data were collected from 30 consecutive patients that visited the outpatient clinic. Per patient, data from four consecutive rheumatologist outpatient visits were collected. Since 2007, disease activity was measured more frequently in Dutch daily clinical practice, increasing from 16 to 79% of visits (2440/3081 visits). In addition, intensification of medication based on disease activity scores increased from 33 to 50% of visits (260/525 visits). DAS/DAS28 was the most frequently used disease activity measure (1596/2440 visits). There was a wide variation among rheumatologists in measuring disease activity and intensification of medication, 20-100% and 0-75% respectively. Over the past years, there has been a large improvement in disease activity assessment in daily clinical practice. Disease activity-based medication intensifications, also called tight control or treat to target, increased to a lesser extent. Large variation between different rheumatologists and clinics indicates that there is still room for improvement. Key Points • Following guideline dissemination disease activity is assessed more frequently (79%). • There is large variation between rheumatologists, indicating room for improvement. • Finding factors that explain variation is necessary to improve tight control in daily practice.

8.
Disabil Rehabil ; 42(7): 957-966, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30453793

RESUMO

Purpose: Goal was to establish whether an intervention that aims to increase goal management competencies is effective in decreasing elevated levels of depressive symptoms and increasing well-being in patients with polyarthritis.Materials and methods: Eighty-five persons with polyarthritis and elevated levels of depressive symptoms participated in the goal management intervention consisting of six group-based meetings. A quasiexperimental design with baseline measurement, follow-up at 6 months and a reference group of 151 patients from an observational study was applied. Primary outcome was depression; secondary outcomes were anxiety, purpose in life, positive affect, satisfaction with participation, goal management strategies, and arthritis self-efficacy. A linear mixed model procedure was applied to evaluate changes in outcomes.Results: No improvement was found for depressive symptoms and no changes were found for the secondary outcomes, except for positive affect that improved in the intervention group. This increase was mediated by an increase in goal adjustment. Furthermore, goal maintenance decreased and self-efficacy for other symptoms increased in the intervention group.Conclusion: This study indicates that interventions designed to aid patients with arthritis with goal management skills are potentially helpful for increasing positive affect, although further studies are needed.Implications for rehabilitationPeople with polyarthritis have to manage their disease in combination with possibly conflicting roles and personal goals, resulting in an ongoing process of finding equilibrium in a constantly changing situation.Based on a person-focused view, the program Right on Target focused on coping with threatened activities and life goals due to arthritis.The program consisted of six group-based meetings led by a trained nurse and a personal trajectory wherein participants were stimulated to try out various behavioral options related to an own threatened activity in concordance with their personal goals.The program seemed effective in increasing flexible goal adjustment and self-efficacy and participants experienced more positive affect directly after the program and at 6-month follow-up.

9.
Best Pract Res Clin Rheumatol ; 33(3): 101436, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31703794

RESUMO

Patient-reported outcome measures are commonly used in the assessment of patients with musculoskeletal diseases. The present review provides an overview of historic and recent developments, including core set recommendations for assessing patient-reported outcomes in patients with fibromyalgia, osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis. The evidence supporting commonly used patient-reported outcomes measures is reviewed. Furthermore, various methodological approaches that can be utilized to evaluate validity and measurement precision of patient reported outcomes are introduced. Commonly used methods based on the classical test theory as well as modern approaches based on item response theory will be discussed. The review finally describes the increasing use of item response theory-based approaches used in patient-reported outcomes assessment in the musculoskeletal diseases.


Assuntos
Doenças Musculoesqueléticas , Medidas de Resultados Relatados pelo Paciente , Humanos
10.
Arthritis Res Ther ; 21(1): 237, 2019 11 12.
Artigo em Inglês | MEDLINE | ID: mdl-31718678

RESUMO

BACKGROUND: The aim of this retrospective study was to examine the longitudinal association between disease activity and radiographic damage in a cohort of patients with early RA (symptom onset < 1 year) treated according to treat-to-target (T2T) therapy. METHODS: Baseline to 3-year follow-up data were used from patients included in the DREAM remission induction cohort. Patients received protocolized T2T treatment, aimed at 28-joint disease activity score-erythrocyte sedimentation rate (DAS28-ESR) remission. Disease activity (DAS28-ESR and C-reactive protein, CRP) were assessed at least every 3 months; X-rays of the hand and feet at inclusion, 6 months, and 1, 2, and 3 years were scored using modified Sharp/van der Heijde scoring (SHS). Between and within-person associations between time-integrated disease activity and radiographic progression over time were examined. RESULTS: A subset of 229 out of 534 included patients were available for analysis. At the between-patient level, time-integrated DAS28-ESR scores were not significantly correlated with progression at the 6 month and 2-year follow-up and only weakly at the 1-year (Pearson's correlation coefficient r = 0.17, P < 0.05) and 3-year follow-up (r = 0.21, P < 0.05). Individual slopes of the relationship between DAS28-ESR and progression scores in each time interval were significantly correlated over time and the slope of the first 6 months was moderately associated with this slope at later time points (r between 0.39 and 0.59; P values < 0.001). Between 15.9 to 22.7% and 16.7 to 38.5% of patients with low and moderate time-integrated disease activity, respectively, experienced relevant (ΔSHS ≥ 3) radiographic progression at the different time intervals. Analyses using CRP showed similar results. CONCLUSIONS: In early RA patients treated according to T2T, radiographic progression appears to be an individually determined disease process, driven by factors other than consistent high disease activity. For individual patients, the intra-patient relation between disease activity and cumulative radiographic damage during the first 6 months is a good indicator for this relation in later years. TRIAL REGISTRATION: Netherlands Trial Register NTR578, 12 January 2006.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Reumatoide/diagnóstico por imagem , Artrite Reumatoide/tratamento farmacológico , Bases de Dados Factuais/tendências , Progressão da Doença , Sistema de Registros , Adulto , Idoso , Artrite Reumatoide/epidemiologia , Estudos de Coortes , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Estudos Retrospectivos
11.
Rheumatol Ther ; 6(4): 587-597, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31659680

RESUMO

INTRODUCTION: This survey assessed the impact of rheumatoid arthritis (RA) on the lives of patients based on the perceptions of both patients and healthcare professionals (HCPs). METHODS: This is a cross-sectional survey of patients with RA. Data were collected from patients and HCPs who manage RA using a structured, closed-ended questionnaire in their local language. Respondents for the survey were recruited from survey panels of verified unique responses. The survey focused on the impact of disease on four domains: daily activities, relationships, work and aspirations. RESULTS: Overall, 1231 adult patients with RA and 270 rheumatologists or other HCPs were surveyed between November 2016 and February 2017. Almost one in three patients believed that the impact of RA is not well understood by people without the disease. Fifty-eight percent [95% confidence interval (CI) 55-61%] of patients felt frustrated when they were unable to undertake or complete daily activities because of their disease. Fifty-seven percent (95% CI 54-60%) of patients wished to be able to accept their life with RA. Forty-three percent (95% CI 40-46%) of patients hoped that the physical impact of RA will be better understood in future. Forty percent (95% CI 37-43%) of patients were forced to take long-term leave/retirement or experienced slow career progression since being diagnosed with RA. Twenty-three percent (95% CI 21-25%) of patients had difficulties in taking care of personal grooming, whereas 8% (95% CI 6-10%) of patients reported that RA ruined their life. Similar responses were observed among HCPs. CONCLUSION: Patients and HCPs feel that the physical and emotional impact of RA is not well understood by people without the disease. In RA treatment decisions, patients' personal goals and patient-reported outcomes should be taken into consideration along with clinical targets. FUNDING: Eli Lilly and Company (Indianapolis, IN, USA).

12.
Ned Tijdschr Geneeskd ; 1632019 08 19.
Artigo em Holandês | MEDLINE | ID: mdl-31433146

RESUMO

The next step in the treatment of immune diseases: jakinibs, inhibitors of the intracellular Janus kinase The intracellular Janus kinase (JAK) and the signal transduction and activator of transcription (STAT) proteins are involved in the whole spectrum of immune-mediated diseases. Currently, agents are developed that influence the JAK-STAT mechanism. JAK inhibitors (jakinibs) have only recently made their way into clinical practice. These agents exhibit both similarities and differences in terms of effectiveness and safety. In the coming years, results from basic and clinical research will improve our knowledge of these agents. For patients who suffer from immune-mediated diseases, their introduction appears to be a breakthrough that will offer new treatment options. One advantage over biologicals is that jakinibs can be taken orally. As with all new innovative medicines, with jakinibs one cannot escape a discussion over costs as well. The balance between the added value of jakinibs compared to biologicals, and the actual purchase prices for each of these treatment modalities, will influence the eventual positioning of jakinibs.


Assuntos
Doenças do Sistema Imunitário/imunologia , Inibidores de Janus Quinases/metabolismo , Janus Quinases/imunologia , Transdução de Sinais/imunologia , Animais , Humanos , Janus Quinase 2/imunologia
13.
Clin Rheumatol ; 38(10): 2727-2736, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31161488

RESUMO

OBJECTIVE: To retrospectively compare the long-term clinical, functional, and cost outcomes for early RA patients (symptoms < 1 year) who did or did not achieve early remission in a treat-to-target strategy. METHOD: Five-year data of 471 patients included in the DREAM remission induction cohort were used. Patients were treated according to a pre-specified 28-joint Disease Activity Score (DAS28) remission driven step-up treatment strategy starting with methotrexate, addition of sulfasalazine, and exchange of sulfasalazine for biological medication in case of failure. Two- and 3-year healthcare costs were available for selected subsamples of patients only. RESULTS: DAS28 remission was achieved in 27.7%, 38.2%, and 51.6% of patients at 2, 3, and 6 months, respectively. Achieving DAS28 remission at 2, 3, or 6 months was consistently associated with significantly lower DAS28 and Health Assessment Questionnaire-Disability scores at 1, 3, and 5 years of follow-up (all P values < 0.02). Patients in remission at 2, 3, or 6 months also had significantly lower medication costs per patient over the first 2 and 3 years of treatment, mainly due to lower biologic use, but differences in total healthcare resource costs (hospital admissions plus consultations) were less pronounced. Mean total medication and total healthcare resource costs at 3 years were €1131 and €1757 for patients in remission at 6 months vs. €7533 (P < 0.01) and €2202 (P = 0.09) for those not in remission. CONCLUSION: Achieving early remission was associated with beneficial clinical outcomes for early RA patients and lower costs in the long term. Key Points • Previous studies in rheumatoid arthritis patients have demonstrated that early good response is associated with sustained remission and better long-term clinical outcomes. • This study extents these findings by examining the long-term benefits of achieving early remission on clinical, patient-reported, and economic outcomes in a real-world cohort of patients with very early rheumatoid arthritis treated according to treat-to-target principles. • The findings of this study clearly demonstrate that aiming for early remission in rheumatoid arthritis patients is beneficial in the long-term in terms of better clinical and functional outcomes and lower healthcare costs.


Assuntos
Artrite Reumatoide/epidemiologia , Artrite Reumatoide/terapia , Custos de Cuidados de Saúde , Indução de Remissão , Adulto , Idoso , Artrite Reumatoide/economia , Produtos Biológicos/administração & dosagem , Feminino , Humanos , Masculino , Metotrexato/administração & dosagem , Pessoa de Meia-Idade , Estudos Retrospectivos , Índice de Gravidade de Doença , Sulfassalazina/administração & dosagem , Resultado do Tratamento
14.
BMC Rheumatol ; 3: 3, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31225430

RESUMO

Background: The aim of this study was to identify predictors of prolonged disease control after discontinuation of tumor necrosis factor inhibitor (TNFi) treatment in patients with rheumatoid arthritis (RA). Methods: Post-hoc analysis of 439 RA patients (67.3% rheumatoid factor positive) with longstanding RA in remission or with stable low disease activity, randomized to stopping TNFi treatment in the multicenter POET trial. Prolonged acceptable disease control was defined as not restarting TNFi treatment within 12 months after stopping. Baseline demographic and disease-related variables were included in univariate and multivariate logistic regression analysis for identifying predictors of relapse. Results: One year after baseline, 220 patients (50.1%) had not restarted TNFi treatment. Use of an anti-TNF monoclonal antibody (versus a receptor antagonist, OR = 2.41; 95% CI: 1.58-3.67), ≤10 yrs. disease duration (OR = 2.15; 95% CI: 1.42-3.26) and low or moderate multi-biomarker disease activity (MBDA) scores (OR = 2.00; 95% CI: 1.10-3.64) at baseline were independently predictive of successful TNFi discontinuation (area under the receiver operating characteristic curve = 0.66; 95% CI: 0.61-0.71). Results were similar when using no physician-reported flare as the criterion. TNFi-free survival was significantly different for patient groups based on the number of predictors present, ranging from 21.4% of patients with no predictor present to 66.7% of patients with all three predictors present. Conclusion: Patients using an anti-TNF monoclonal antibody, with shorter disease duration and low or moderate baseline MBDA score are most likely to achieve prolonged disease control after TNFi discontinuation. Trial registration: Netherlands Trial Register NTR3112, 21 October 2011.

15.
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
16.
Health Qual Life Outcomes ; 17(1): 63, 2019 Apr 11.
Artigo em Inglês | MEDLINE | ID: mdl-30975212

RESUMO

BACKGROUND: Gout is a common, monosodium urate crystal-driven inflammatory arthritis. Besides its clinical manifestations, patients often also suffer from pain, physical impairment, emotional distress and work productivity loss, as a result of the disease. Patient-reported outcome measures (PROMs) are commonly used to assess these consequences of the disease. However, current instrument endorsements for measuring such outcomes in acute and chronic gout clinical settings are based on limited psychometric evidence. The objective of this systematic literature review was to identify currently available PROMs for gout, and to critically evaluate their content and psychometric properties, in order to evaluate the current status regarding PROMs for use in gout patients. METHODS: Systematic literature searches were performed in the PubMed and EMBASE databases. The methodological quality of included papers was appraised using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist, and evaluation of measurement properties (reliability, responsiveness, construct validity, floor and ceiling effects) was done in accordance with published quality criteria. Item content was appraised by linking health concepts to the International Classification of Functioning Disability and Health (ICF) framework. RESULTS: In total, 13 PROMs were identified, of which three were targeted specifically at gout patients. The majority of the PROMs were rated positively for content validity. For most instruments, limited evidence was available for construct validity and reliability. Instruments to assess pain scored well on responsiveness and floor and ceiling effects, but not much is known about their reliability in gout. CONCLUSIONS: The physical functioning subscale of the SF-36v2 (Short Form-36 item version 2) is the only PROM that had sufficient supporting evidence for all its psychometric properties. Many of the commonly used PROMs in gout are currently not yet well supported and more studies on their measurement properties are needed among both acute and chronic gout populations.


Assuntos
Gota/psicologia , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Humanos , Medição da Dor , Psicometria , Reprodutibilidade dos Testes , Estudos de Validação como Assunto
17.
Qual Life Res ; 28(9): 2543-2552, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31028510

RESUMO

OBJECTIVE: To assess psychometric properties and cross-language measurement equivalence of six versions of the Bristol Rheumatoid Arthritis Fatigue Scale (BRAF-MDQ) and the Rheumatoid Arthritis Impact of Disease Score (RAID in rheumatoid arthritis (RA). METHODS: Both questionnaires were completed by French (n = 206), German (n = 206), Dutch (n = 317), Spanish (n = 157), Swedish (n = 170) and UK (n = 210) RA patients. The presence of cross-language differential item functioning (DIF) was examined using the generalized partial credit model. The impact of DIF on the item and total scores was examined by comparing DIF unadjusted and DIF adjusted expected item and scale scores. IRT-based methods were used to assess psychometric properties of the instruments. RESULTS: 11 of the 20 BRAF-MDQ (55%) and 4 of the 7 RAID items (57%) exhibited significant DIF in at least one of the six countries. The mean number of items with DIF per country was 2.6 for BRAF-MDQ and 1.1 for RAID. However, the impact of DIF on the total RAID and BRAF-MDQ scores, as well as the BRAF subscales, was found to be negligible at the group level. Only for the BRAF physical subscale was there evidence of minor DIF. Marginal reliabilities of BRAF-MDQ (0.93) and RAID (0.89) were excellent, and precise scores could be obtained across the spectrum of disease impact and fatigue scores measured by these PROMs. CONCLUSION: This study supports the cross-language measurement equivalence of BRAF-MDQ and RAID and provides further support for the psychometric properties of these measures in RA.


Assuntos
Artrite Reumatoide/psicologia , Fadiga/diagnóstico , Psicometria/métodos , Qualidade de Vida/psicologia , Adulto , Feminino , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Suécia , Traduções
18.
Rheumatology (Oxford) ; 58(11): 1928-1934, 2019 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-30859221

RESUMO

OBJECTIVE: Inflammation-related symptoms such as pain, swelling and tenderness of the affected joint are frequently assessed using 5-point diary rating scales in gout clinical trials. Combining these into a single gout attack symptom intensity score may be a useful summary measure for these data, which is potentially more responsive to change compared with the individual components. The objective of this study was to develop a patient-reported gout flare intensity score, the Gout Attack Intensity Score (GAIS), for use in clinical studies, that includes components for gout-related pain, swelling and tenderness. METHODS: Data from a randomized controlled trial comparing anakinra to standard of care for the treatment of acute gout attacks were used for this study. A 7-day flare diary was completed by patients, including questions relating to intensity of pain, swelling and tenderness (5-point rating scales). Scalability of these items was assessed using Mokken Scale Analysis, and reliability using greatest lower bound reliability coefficients. Known-groups validity was evaluated, as well as the responsiveness to change and the presence of floor and ceiling effects. RESULTS: Scalability of the single items was supported, and GAIS scores were reliable (greatest lower bound >0.80). GAIS scores demonstrated responsiveness to change with high effect sizes (>0.8), and discriminated better between responders and non-responders compared with its single-item components. No floor and ceiling effects were found. CONCLUSION: The GAIS seems to be a reliable and responsive instrument for assessing patient-reported gout attack intensity that may be used in gout clinical studies.


Assuntos
Gota/patologia , Medidas de Resultados Relatados pelo Paciente , Índice de Gravidade de Doença , Avaliação de Sintomas/normas , Exacerbação dos Sintomas , Idoso , Anti-Inflamatórios não Esteroides/uso terapêutico , Antirreumáticos/uso terapêutico , Colchicina/uso terapêutico , Método Duplo-Cego , Feminino , Gota/tratamento farmacológico , Humanos , Proteína Antagonista do Receptor de Interleucina 1/uso terapêutico , Masculino , Pessoa de Meia-Idade , Ensaios Clínicos Controlados Aleatórios como Assunto , Reprodutibilidade dos Testes , Sensibilidade e Especificidade , Avaliação de Sintomas/métodos
19.
J Pain Res ; 12: 395-404, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30705605

RESUMO

Purpose: Generalized pain hypersensitivity is frequently observed in chronic pain conditions. Currently, identification is based on expert clinical opinion, and in very few cases combined with quantitative sensory testing. The objectives of this study were to develop and evaluate a short self-report measure of generalized pain hypersensitivity: a generalized pain questionnaire (GPQ). Methods: Items for the GPQ were developed based on a literature review, followed by an interview study with ten rheumatic patients with suspected pain hypersensitivity. We examined the psychometric properties of the preliminary items in a sample of 212 outpatients suffering from either fibromyalgia (FM; n=98) or rheumatoid arthritis (n=114). Additionally, self-reported data were gathered on sociodemographics, fibromyalgia-survey criteria, health status, and neuropathic-like pain features. Results: Mokken-scale analyses demonstrated a unidimensional seven-item scale with strong homogeneity (H=0.65) and high reliability (r=0.90). Correlations between total GPQ scores and relevant external measures, such as the FM-survey criteria and neuropathic-like pain features, were consistent with a priori expectations, supporting its external construct validity. Furthermore, the GPQ had good accuracy in distinguishing between patients with FM (generally assumed to be the result of central nervous system hypersensitization) and patients with RA (assumed to result mostly in local nociceptive or inflammatory pain), with an area under the receiver-operating characteristic curve of 0.89. A cutoff value >10 had the highest combination of sensitivity (82.7%) and specificity (77.2%). Conclusion: The GPQ is psychometrically sound and appears promising for measuring the presence and severity of generalized pain hypersensitivity in chronic pain patients.

20.
Artigo em Inglês | MEDLINE | ID: mdl-30602035

RESUMO

Objectives: To evaluate the efficacy and safety of anakinra in treating acute gout flares in a randomized, double-blind, placebo-controlled, active comparator, non-inferiority (NI) trial. Methods: Patients with a crystal-proven acute gout flare were randomized (1: 1) to treatment with anakinra or treatment as usual (free choice: either colchicine, naproxen or prednisone). The primary end point was the change in pain between baseline and the averaged pain score on days 2-4 measured on a five-point rating scale. NI of anakinra would be established if the upper bound of the 95% CI of the numeric difference in changed pain scores between treatment groups did not exceed the NI limit of 0.4 in favour of treatment as usual, in the per-protocol (PP) and intention-to-treat (ITT) populations, assessed in an analysis of covariance model. Secondary outcomes included safety assessments, improvement in pain, swelling, tenderness and treatment response after 5 days, assessed using linear mixed models and binary logistic regression models. Results: Forty-three patients received anakinra and 45 treatment as usual. Anakinra was non-inferior (mean difference; 95% CI) to treatment as usual in both the PP (-0.13; -0.44, 0.18) and ITT (-0.18; -0.44, 0.08) populations. No unexpected or uncommon (serious) adverse events were observed in either treatment arm. Analyses of secondary outcomes showed that patients in both groups reported similar significant reductions in their gout symptoms. Conclusion: Efficacy of anakinra was shown to be non-inferior to treatment as usual for the treatment of acute gout flares, suggesting that anakinra is an effective treatment alternative for acute gout flares. Trial registration: Het Nederlands Trial Register, www.trialregister.nl, NTR5234.

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