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1.
Ann Rheum Dis ; 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38876509

RESUMO

BACKGROUND: Since the publication of the 2011 European Alliance of Associations for Rheumatology (EULAR) recommendations for patient research partner (PRP) involvement in rheumatology research, the role of PRPs has evolved considerably. Therefore, an update of the 2011 recommendations was deemed necessary. METHODS: In accordance with the EULAR Standardised Operational Procedures, a task force comprising 13 researchers, 2 health professionals and 10 PRPs was convened. The process included an online task force meeting, a systematic literature review and an in-person second task force meeting to formulate overarching principles (OAPs) and recommendations. The level of agreement of task force members was assessed anonymously (0-10 scale). RESULTS: The task force developed five new OAPs, updated seven existing recommendations and formulated three new recommendations. The OAPs address the definition of a PRP, the contribution of PRPs, the role of informal caregivers, the added value of PRPs and the importance of trust and communication in collaborative research efforts. The recommendations address the research type and phases of PRP involvement, the recommended number of PRPs per project, the support necessary for PRPs, training of PRPs and acknowledgement of PRP contributions. New recommendations concern the benefits of support and guidance for researchers, the need for regular evaluation of the patient-researcher collaboration and the role of a designated coordinator to facilitate collaboration. Agreements within the task force were high and ranged between 9.16 and 9.96. CONCLUSION: The updated EULAR recommendations for PRP involvement are more substantially based on evidence. Together with added OAPs, they should serve as a guide for researchers and PRPs and will ultimately strengthen the involvement of PRPs in rheumatology research.

2.
Clin Exp Rheumatol ; 41(3): 704-710, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35930489

RESUMO

OBJECTIVES: Patient centred care is an increasingly important paradigm. Applying a treat-to-target strategy to the impact of the disease in patients' lives seems a very promising tool to serve this purpose. We aimed to evaluate if maximum acceptable impact scores (target-values) defined at the population level provide an appropriate representation for most individual patients. To determine if the individually established target values of impact are consistent enough to be used in a treat-to-target strategy. METHODS: Consecutive patients with rheumatoid arthritis were asked to indicate, in two consecutive visits, the maximum severity of impact they considered acceptable to live with for the rest of their lives, in the seven domains of Rheumatoid Arthritis Impact of Disease score. The individual adequacy of population-based reference values was assessed by measures of dispersion. Stability of individual target-values were evaluated through intraclass correlation coefficient. Socio-demographic, clinical and psychological features were tested as co-factors of stability. RESULTS: 299 patients were included. The dispersion of targets was wide (CV>0.68), thus limiting the use of any population-based single values as targets for the individual patients. Although the mean target values were very similar in both visits for all domains, reliability was poor in all cases (ICCs: 0.37-0.47). Only 25-30% of the patients selected the same target value in the 2 visits. No explanatory factors for (non-)stability were identified. CONCLUSIONS: Quantified impact targets defined at population level are not appropriate for individual patient care. Research on alternative tools to support patient-centred, target-oriented management strategies is warranted.


Assuntos
Artrite Reumatoide , Humanos , Reprodutibilidade dos Testes , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/terapia , Artrite Reumatoide/psicologia
3.
Ann Rheum Dis ; 81(5): 695-709, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34972811

RESUMO

OBJECTIVES: To describe the safety of vaccines against SARS-CoV-2 in people with inflammatory/autoimmune rheumatic and musculoskeletal disease (I-RMD). METHODS: Physician-reported registry of I-RMD and non-inflammatory RMD (NI-RMDs) patients vaccinated against SARS-CoV-2. From 5 February 2021 to 27 July 2021, we collected data on demographics, vaccination, RMD diagnosis, disease activity, immunomodulatory/immunosuppressive treatments, flares, adverse events (AEs) and SARS-CoV-2 breakthrough infections. Data were analysed descriptively. RESULTS: The study included 5121 participants from 30 countries, 90% with I-RMDs (n=4604, 68% female, mean age 60.5 years) and 10% with NI-RMDs (n=517, 77% female, mean age 71.4). Inflammatory joint diseases (58%), connective tissue diseases (18%) and vasculitis (12%) were the most frequent diagnostic groups; 54% received conventional synthetic disease-modifying antirheumatic drugs (DMARDs), 42% biological DMARDs and 35% immunosuppressants. Most patients received the Pfizer/BioNTech vaccine (70%), 17% AstraZeneca/Oxford and 8% Moderna. In fully vaccinated cases, breakthrough infections were reported in 0.7% of I-RMD patients and 1.1% of NI-RMD patients. I-RMD flares were reported in 4.4% of cases (0.6% severe), 1.5% resulting in medication changes. AEs were reported in 37% of cases (37% I-RMD, 40% NI-RMD), serious AEs in 0.5% (0.4% I-RMD, 1.9% NI-RMD). CONCLUSION: The safety profiles of SARS-CoV-2 vaccines in patients with I-RMD was reassuring and comparable with patients with NI-RMDs. The majority of patients tolerated their vaccination well with rare reports of I-RMD flare and very rare reports of serious AEs. These findings should provide reassurance to rheumatologists and vaccine recipients and promote confidence in SARS-CoV-2 vaccine safety in I-RMD patients.


Assuntos
Antirreumáticos , COVID-19 , Doenças Musculoesqueléticas , Doenças Reumáticas , Idoso , Antirreumáticos/efeitos adversos , COVID-19/epidemiologia , COVID-19/prevenção & controle , Vacinas contra COVID-19/efeitos adversos , Feminino , Humanos , Imunossupressores/efeitos adversos , Masculino , Pessoa de Meia-Idade , Doenças Musculares , Doenças Musculoesqueléticas/induzido quimicamente , Doenças Musculoesqueléticas/tratamento farmacológico , Doenças Musculoesqueléticas/epidemiologia , Sistema de Registros , Doenças Reumáticas/tratamento farmacológico , Reumatologistas , SARS-CoV-2 , Vacinação/efeitos adversos
4.
Rheumatology (Oxford) ; 62(1): 98-107, 2022 12 23.
Artigo em Inglês | MEDLINE | ID: mdl-35482485

RESUMO

OBJECTIVES: The Patient Experienced Symptom State (PESS) is a single-question, patient-reported outcome that is validated to assess global disease impact in RA. This study addresses its sensitivity to change, and reliability. METHODS: Disease activity, disease impact in the seven domains of RA Impact of Disease (RAID) and PESS were assessed in patients with RA from the NOR-DMARD registry, at two visits, 6 months apart. The PESS over the last week was scored at five levels, from 'very bad' to 'very good'. Disease impact and disease activity were compared between patients who improved, maintained or worsened PESS over time, through one-way analysis of variance, with post hoc Bonferroni correction. Correlations between changes in these parameters were assessed through Spearman's correlation coefficient. Sensitivity to change was assessed by standardized response mean (SRM) between the two visits. Reliability was analysed through intraclass correlation coefficient (ICC) between the two visits in patients with stable disease activity and impact. RESULTS: In 353 patients [76.8% females, mean (s.d.) 9.9 (9.6) years disease duration], improvement in PESS level was associated with substantial improvements in mean impact in all domains as well as disease activity (P <0.02). PESS change was moderately to strongly correlated with RAID domains and disease activity (rho: 0.4-0.7). PESS was responsive to change (SRM: 0.65, 95% CI: 0.54, 0.76), particularly among RAID responders (SRM: 1.79, 95% CI: 1.54, 1.99). PESS was moderately reliable in patients with stable condition (ICC: 0.72, 95% CI: 0.52, 0.83). CONCLUSION: PESS is valid, feasible, reliable and responsive, representing an opportunity to improve the assessment of disease impact with minimal questionnaire burden.


Assuntos
Antirreumáticos , Artrite Reumatoide , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Artrite Reumatoide/tratamento farmacológico , Artrite Reumatoide/diagnóstico , Inquéritos e Questionários , Antirreumáticos/uso terapêutico
5.
Rheumatology (Oxford) ; 59(11): 3458-3467, 2020 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-32375173

RESUMO

OBJECTIVES: In RA, Patient Acceptable Symptom State assesses disease from the patient's perspective, which does not correspond either to disease remission or to full control of disease impact. This study aims to explore the properties of a novel multilevel Patient Experienced Symptom State (PESS). METHODS: This was a cross-sectional analysis of two datasets of patients with RA. PESS was assessed through the question: 'Consider how your RA has affected you. If you remain in the coming months as you have been the last week, how would you rate your condition?', with five levels (from 'very bad' to 'very good'). Construct validity of PESS was assessed against validated disease activity [DAS28, Simplified Disease Activity Index (SDAI) and Clinical Disease Activity Index (CDAI)] and impact measures [RA Impact of Disease (RAID) and modified HAQ]. Multiple pairwise comparisons between groups and receiver-operating characteristic curves with Youden Index were performed. RESULTS: A total of 1407 patients [74% female, mean (S.d.) age 53.5 (13.4) years, mean disease duration 14.3 (12.0) years and mean DAS28 3.0 (1.5)] were analysed. Overall, 16.3% considered themselves as being in 'very good', 21.6% in 'good' and 31.9% in 'acceptable' state. Disease activity and impact measures differed significantly across the five levels (P < 0.01). Cut-off values corresponding to 'good' and 'very good' PESS states were in the range of low disease activity/remission (for 'good' and 'very good': DAS28-ESR-4v ≤2.6/≤2.3; CDAI ≤5.0/≤3.1; SDAI ≤5.1/≤3.8, respectively) and very low disease impact (RAID domains all ≤1). CONCLUSION: PESS 'very good' status corresponds to currently recommended targets for RA management and reflects full control of disease impact. PESS appears to be an easy-to-use and relevant measure in the evaluation of patients with RA.


Assuntos
Artrite Reumatoide/fisiopatologia , Medidas de Resultados Relatados pelo Paciente , Adulto , Idoso , Artrite Reumatoide/tratamento farmacológico , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Indução de Remissão , Índice de Gravidade de Doença
6.
Rheumatology (Oxford) ; 59(5): 1137-1147, 2020 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-31600398

RESUMO

OBJECTIVES: Patient global assessment (PGA) is purported to add the patient's perspective in the composite measures of RA. However, PGA is not standardized and it is not known whether patients' interpretation of the measure is consistent with its intended purpose. This study aimed to explore difficulties experienced by patients with RA in completing PGA, and to assess the impact of a structured explanation in improving its validity and reliability. METHODS: This was a mixed methods study, using interviews, focus groups and PGA data. During interviews, patients (convenience sample, n = 33) completed three often-used PGA formulations. Then a nurse provided structured explanation about what PGA is and why it is used. After further discussion, patients completed one PGA version again. Interviews were recorded, transcribed and analysed using inductive thematic analysis. We compared PGA scores pre- and post-explanation (Wilcoxon signed-ranks) and the proportion of patients achieving RA remission with PGA ⩽1 (McNemar's tests). RESULTS: Three themes emerged: understanding the meaning of PGA, the purpose of PGA and measurement difficulties. The difficulties caused systematic errors in PGA completion such as marking higher when feeling well, marking near the centre or away from zero. The structured explanation was helpful. Following the explanation, the median PGA score decreased from 3.0 to 2.1 cm, and the proportion of non-remission solely due to PGA >1 from 52% to 41%; none of these changes was statistically significant. CONCLUSION: Many patients have difficulties in completing PGA. Standardization of PGA and a structured explanation may improve its clarity, validity and reliability.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Artrite Reumatoide/epidemiologia , Saúde Global , Medidas de Resultados Relatados pelo Paciente , Adulto , Artrite Reumatoide/diagnóstico , Feminino , Grupos Focais , Humanos , Incidência , Internacionalidade , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Medição de Risco , Índice de Gravidade de Doença , Estatísticas não Paramétricas , Resultado do Tratamento
7.
Clin Exp Rheumatol ; 38(2): 314-321, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31365331

RESUMO

OBJECTIVES: Fatigue is one of the most prevalent and disabling symptoms among patients with rheumatoid arthritis (RA), however, it is frequently neglected by health professionals. This study aimed to develop a multidimensional explanatory model of fatigue in patients with RA as a basis for better understanding and intervention. METHODS: This was an ancillary analysis of an observational, cross-sectional, single centre study. Patients completed a questionnaire including demographic data and measures of pain, sleep, disability, anxiety, depression, and personality. Fatigue was assessed by the Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F). Disease activity and haemoglobin levels were assessed. Path analysis was performed to test and improve a hypothesised model for fatigue. RESULTS: This analysis included 142 patients, with a mean (SD) age of 61.1 (11.7) years. The final path analysis model presented acceptable fit and explained 60.0% of the variance of fatigue. The predominant direct explanatory factors identified were disability (46.5%) and depression (41.2%), the latter having an additional indirect influence of 19% through disability. Age (-16.2%) and sleep disturbance (15.7%) were also directly linked to fatigue. Personality trait extroversion (-22.4%), pain (20.0%), and disease activity (14.9%) are only indirectly related to fatigue. CONCLUSIONS: Depression, disability and sleep disturbance appear to be the main factors explaining fatigue in patients with RA. Disease activity, pain, and personality seem to play only a secondary role, extroversion being the only personality trait associated with fatigue. These findings foster a shift in the paradigm of care towards a more holistic management of fatigue, integrating adjunctive therapies beyond measures targeted solely at disease remission.


Assuntos
Artrite Reumatoide , Depressão/complicações , Fadiga/etiologia , Transtornos do Sono-Vigília/complicações , Artrite Reumatoide/fisiopatologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
8.
Rheumatology (Oxford) ; 58(Suppl 5): v3-v9, 2019 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-31435662

RESUMO

Fatigue is one of the most important symptoms for patients with RA, and imposes a great burden on patients' lives, being associated with significantly reduced health-related quality of life. Although being recognized by the rheumatology community as a major gap in the current management of the disease, fatigue has not been easy to measure and conceptualize. Part of the problem seems to reside in the multidimensional causality of this phenomenon, which may warrant dedicated measures and interventions. Although there are several instruments available to measure it, no consensus has yet been reached to recommend a 'gold-standard'. This review aims at synthesizing the role of fatigue in the global impact of RA; describing validated instruments and their psychometric properties as measures of fatigue among patients with RA; and finally proposing a clinically meaningful, valid and feasible process to measure fatigue in clinical practice.


Assuntos
Artrite Reumatoide/complicações , Fadiga/etiologia , Medicina Baseada em Evidências/métodos , Fadiga/diagnóstico , Humanos , Psicometria , Reprodutibilidade dos Testes , Índice de Gravidade de Doença
9.
Clin Exp Rheumatol ; 37(4): 641-648, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30418126

RESUMO

OBJECTIVES: Depressive symptoms are common among patients with rheumatoid arthritis (RA). This study was aimed at developing a multifactorial explanatory model that evaluated the influence of personality traits, disease activity, perceived disease impact, and comorbidities. METHODS: This cross-sectional study used structural equation modelling estimation to analyse the associations between these dimensions, pursuing three hypotheses. Depressive symptoms were assessed using the Hospital Anxiety and Depression Scale, disease impact by the Rheumatoid Arthritis Impact of Disease score, personality by the Ten Item Personality Inventory and the disease activity through the Disease Activity Score 28 joints. The influence of comorbidities was investigated by multigroup analysis. RESULTS: The final model derived from data of 254 patients presented a good fit. Disease activity had an indirect relation with depressive symptoms mediated by disease impact (ß=0.17, p<0.001), but the direct relationship between disease activity and depressive symptoms was not significant (ß=0.09; p=0.07). "Positive" personality had a strong negative direct relation with depressive symptoms as well as an indirect relationship mediated by disease impact (total effect ß=-0.61, p<0.001). The final proposed model explained 58% of the variance of depressive symptoms. Multigroup analysis showed an invariant model when comparing patients with and without comorbidities (dχ2=9.03; df=12; p=0.70). CONCLUSIONS: Personality characteristics seem to have a major influence upon the impact of disease and the patient's adjustment to RA, including the vulnerability or resilience to depression. Individual personality traits deserve attention in tailored assessment and treatment of patients with RA, in order to optimise outcomes.


Assuntos
Artrite Reumatoide , Efeitos Psicossociais da Doença , Transtorno Depressivo , Artrite Reumatoide/epidemiologia , Artrite Reumatoide/psicologia , Estudos Transversais , Depressão , Transtorno Depressivo/epidemiologia , Humanos , Personalidade , Inventário de Personalidade
10.
Rheumatol Int ; 39(4): 715-722, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30415453

RESUMO

Osteoarthritis (OA) is the most prevalent rheumatic disease and is a leading cause of decreased quality of life (QoL). The OA Quality of Life questionnaire (OAQoL) is an OA-specific patient-reported outcome measures. The aim of this study was to translate and validate the original UK English version of the Osteoarthritis Quality of Life (OAQoL) questionnaire into European Portuguese. The translation of the questionnaire was carried out according to a dual panel methodology (bilingual panel followed by lay panel). This was followed by cognitive debriefing interviews (CDIs) with OA patients to assess comprehension and relevance of the translated questionnaire. Finally, a validation survey was conducted to assess its psychometric properties. The Portuguese OAQoL, a comparator scale (the Nottingham Health Profile-NHP) as well as questions relating to demographic and disease information were administered to OA patients. A sub-sample of patients also completed the Portuguese OAQoL two weeks later, to assess test-retest reliability. The internal consistency, construct validity and known group validity (according to perceived OA severity) of the scale was also assessed. Both the bilingual and lay panels consisted of five individuals and no major difficulties relating to the translation process were identified. A total of ten patients with OA participated in the CDIs. The mean time to complete the questionnaire was 5 min. These interviews revealed that the Portuguese version of the OAQoL was clear, relevant and easy to complete. Finally, 53 OA patients (44 females; mean age of 67.6 years) completed the validation survey. Cronbach's alpha coefficient was 0.87, demonstrating high internal consistency. Test-retest reliability, assessed by Spearman's rank correlation coefficient, was 0.86. Moderate correlations were found with the majority of the NHP sections, providing evidence of construct validity. Significant differences in OAQoL scores were found between patients who differed according to their perceived OA severity, providing evidence of known group validity. The Portuguese version of the OAQoL is a valid and reliable questionnaire that can be used to assess QoL in OA, both in clinical practice and for research purposes.


Assuntos
Osteoartrite/fisiopatologia , Qualidade de Vida , Idoso , Assistência à Saúde Culturalmente Competente , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Osteoartrite/psicologia , Medidas de Resultados Relatados pelo Paciente , Portugal , Índice de Gravidade de Doença , Inquéritos e Questionários , Traduções
11.
Ann Rheum Dis ; 77(8): 1118-1124, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29625967

RESUMO

OBJECTIVES: Besides increasing longevity, the ultimate goal of medical care is to improve patients' enjoyment of life, a concept akin to happiness. This study examined the determinants of happiness and quality of life (QoL) in patients with rheumatoid arthritis (RA). METHODS: In this observational, cross-sectional study, patients were assessed on disease activity, disease impact, personality, QoL and happiness. Structural equation modelling estimation was used to analyse the associations between these dimensions, pursuing three hypotheses: H1-disease activity and perceived impact of disease are negatively associated with overall QoL and happiness in patients with RA; H2-'positive' personality traits are related to happiness both directly and indirectly through perceived disease impact; H3-happiness has a mediating effect in the relation between impact of disease and QoL. RESULTS: Data from 213 patients were analysed. Results supported all driving hypotheses. Happiness was positively related to 'positive' personality and, to a lesser extent, negatively related to impact of disease. Impact of disease, in turn, was positively related to disease activity and mitigated by 'positive' personality traits. Impact of disease had a much stronger relation with QoL than with happiness. Happiness mitigated the negative effect of disease impact on QoL. CONCLUSION: Optimisation of QoL and happiness of people with RA requires effective control of the disease process and also improvement of the disease impact domains. Personality seems to play a pivotal mediating role in these relations.


Assuntos
Artrite Reumatoide/reabilitação , Felicidade , Modelos Psicológicos , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Artrite Reumatoide/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Personalidade , Psicometria , Índice de Gravidade de Doença
12.
Qual Life Res ; 27(11): 2909-2921, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30069794

RESUMO

PURPOSE: The Rheumatoid Arthritis Impact of Disease (RAID) score assesses seven impact domains of interest for people with RA. This study aimed to test patients' understanding of the Portuguese RAID and evaluate its cross-cultural validity for use in Portugal. METHODS: This was a mixed methods study comprising two phases: (i) cognitive debriefing to determine patient's comprehension of the Portuguese RAID and (ii) cross-cultural validation using Rasch analysis. Construct validity was determined by fit to the model, invariance culture (compared with France and UK datasets) and evidence of convergent and divergent validity. RESULTS: Patients' input (n = 38) led to minor changes in the phrasing of two items to ensure conceptual equivalence between the Portuguese and the original RAID. In Rasch analysis (n = 288), two items 'Sleep' and 'Physical well-being' in the Portuguese dataset did not adequately fit the model specifications, suggesting multidimensionality (sleep-not necessarily associated with RA) and redundancy (physical well-being overlapping with functional disability). Despite the imperfections, the scale had high internal consistency, evidence of convergent and divergent validity and invariance to culture (compared to France n = 195 and UK n = 205 datasets). The scale was well targeted for patients with different levels of disease impact. CONCLUSIONS: The RAID has been successfully adapted into Portuguese and it can be used with confidence in clinical practice. Further research will be required to ensure it captures the full range of sleep problems in RA. Meanwhile, data across the three countries (Portugal, France and the UK) are comparable except for the two items (sleep and physical well-being).


Assuntos
Artrite Reumatoide/diagnóstico , Qualidade de Vida/psicologia , Artrite Reumatoide/psicologia , Comparação Transcultural , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Portugal , Reprodutibilidade dos Testes , Projetos de Pesquisa , Inquéritos e Questionários
13.
Rheumatology (Oxford) ; 56(9): 1573-1578, 2017 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-28859325

RESUMO

Objectives: ACR/EULAR Boolean remission in RA is frequently not obtained solely due to a patient global assessment (PGA) >1/10 (a condition often designated as near-remission). This study aimed to assess which domains of impact could explain an elevated PGA in near-remission patients. Methods: We performed an ancillary analysis of data from three cross-sectional studies in patients with established RA. Three disease activity states were defined: remission (tender and swollen joint counts, CRP and PGA all ⩽1), near-remission (tender and swollen joint counts, and CRP are all ≤1 but PGA >1) and non-remission. Physical and psychological domains were assessed using the RA Impact of Disease 0-10 (numeric rating scale) as explanatory factors of PGA. Univariable and multivariable linear regression analyses were performed to explain PGA. Results: A total of 1588 patients (79.1% females) were analysed. The mean disease duration was 13.0 years (s.d. 9.8) and the 28-joint DAS with four variables was 3.2 (s.d. 1.4). Near-remission [mean PGA 3.6 (s.d. 1.9)] was more frequent (19.1%) than remission (12.3%). Scores of RA Impact of Disease domains were similar in near-remission and non-remission patients. In near-remission, PGA was explained (R2adjusted = 0.55) by pain (ß = 0.29), function (ß = 0.23), physical well-being (ß = 0.19) and fatigue (ß = 0.15). Conclusion: Near-remission was more frequent than remission. These patients, despite having no signs of significant inflammation, report an impact of disease similar to the non-remission patients. PGA in near-remission seems to be driven by physical rather than psychological domains. Selecting the best therapy for these patients requires a better understanding of the meaning of PGA, both globally and in individual patients.


Assuntos
Artrite Reumatoide/tratamento farmacológico , Medidas de Resultados Relatados pelo Paciente , Adaptação Psicológica , Adulto , Idoso , Artrite Reumatoide/psicologia , Biomarcadores/sangue , Proteína C-Reativa/metabolismo , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Indução de Remissão , Índice de Gravidade de Doença , Estresse Psicológico/etiologia
15.
Rheumatology (Oxford) ; 55(4): 697-703, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26672905

RESUMO

OBJECTIVES: Assess the effectiveness and safety of biologic therapy as well as predictors of response at 1 year of therapy, retention rate in biologic treatment and predictors of drug discontinuation in JIA patients in the Portuguese register of rheumatic diseases. METHODS: We prospectively collected patient and disease characteristics from patients with JIA who started biological therapy. Adverse events were collected during the follow-up period. Predictors of response at 1 year and drug retention rates were assessed at 4 years of treatment for the first biologic agent. RESULTS: A total of 812 JIA patients [65% females, mean age at JIA onset 6.9 years (s.d. 4.7)], 227 received biologic therapy; 205 patients (90.3%) were treated with an anti-TNF as the first biologic. All the parameters used to evaluate disease activity, namely number of active joints, ESR and Childhood HAQ/HAQ, decreased significantly at 6 months and 1 year of treatment. The mean reduction in Juvenile Disease Activity Score 10 (JADAS10) after 1 year of treatment was 10.4 (s.d. 7.4). According to the definition of improvement using the JADAS10 score, 83.3% respond to biologic therapy after 1 year. Fourteen patients discontinued biologic therapies due to adverse events. Retention rates were 92.9% at 1 year, 85.5% at 2 years, 78.4% at 3 years and 68.1% at 4 years of treatment. Among all JIA subtypes, only concomitant therapy with corticosteroids was found to be univariately associated with withdrawal of biologic treatment (P = 0.016). CONCLUSION: Biologic therapies seem effective and safe in patients with JIA. In addition, the retention rates for the first biologic agent are high throughout 4 years.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Juvenil/tratamento farmacológico , Produtos Biológicos/uso terapêutico , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Adolescente , Antirreumáticos/efeitos adversos , Artrite Juvenil/diagnóstico , Produtos Biológicos/efeitos adversos , Sedimentação Sanguínea , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Adesão à Medicação/estatística & dados numéricos , Prognóstico , Estudos Prospectivos , Sistema de Registros , Índice de Gravidade de Doença , Resultado do Tratamento
16.
BMC Musculoskelet Disord ; 17: 84, 2016 Feb 16.
Artigo em Inglês | MEDLINE | ID: mdl-26879247

RESUMO

BACKGROUND: Inflammatory bowel diseases are associated with a variety of extra-intestinal manifestations. The most frequent of these is joint involvement, which affects 16-33 % of IBD patients. Our aim was to evaluate the ultrasound prevalence of sub-clinical joint and entheseal involvement in patients with IBD without musculoskeletal symptoms, and to correlate the US findings with clinical and laboratory variables. METHODS: We recorded the clinical and laboratory data of 76 patients with IBD, 20 patients with spondyloarthritis (SpA) and 45 healthy controls at three rheumatology centers. All of the IBD patients and healthy controls were clinically examined by a rheumatologist in order to confirm the absence of musculoskeletal symptoms, and all of the subjects underwent grey-scale (GS) and power Doppler (PD) US examinations of the second and third metacarpophalangeal joints, knees and lower limbs in order to detect joint or entheseal abnormalities. RESULTS: A total of 1410 entheseal sites and 1410 joints were evaluated by US. Of the 76 patients with IBD, 64 (84.1 %) had at least one GS entheseal abnormality, and 11 (13.9 %) had more than one PD-positive entheseal site; 32 (42.1 %) showed sub-clinical joint involvement. There was a significant difference between the IBD patients and healthy controls in terms of global entheseal, PD-positive entheseal, and joint involvement (p < 0.0001), but no difference between the IBD and SpA patients. Anti-neutrophil cytoplasmic antibodies predicted entheseal involvement in patients with IBD (OR 6.031; p = 0.015). CONCLUSIONS: The prevalence of sub-clinical joint and entheseal involvement was higher in IBD patients than healthy controls, but there was no difference between the IBD and SpA patients.


Assuntos
Doenças Inflamatórias Intestinais/diagnóstico por imagem , Doenças Inflamatórias Intestinais/epidemiologia , Artropatias/diagnóstico por imagem , Artropatias/epidemiologia , Dor Musculoesquelética/diagnóstico por imagem , Dor Musculoesquelética/epidemiologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Método Simples-Cego , Ultrassonografia , Adulto Jovem
18.
Rheumatology (Oxford) ; 54(2): 286-91, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25173347

RESUMO

OBJECTIVES: . The 28-joint DAS (DAS28), clinical disease activity index (CDAI) and simplified disease activity index (SDAI) are indices frequently used to assess disease activity in RA patients. Cut-off values were defined to classify the states of RA disease activity: remission, low, moderate and high. The aim of this work was to assess disease activity states classified by DAS28, CDAI and SDAI and to analyse their agreement in the Rheumatic Diseases Portuguese Register Reuma.pt. METHODS: . A total of 2795 patients and 14 440 visits were selected from Reuma.pt for analysis. Pearson's correlation coefficients (PCCs) were calculated for the three indices. McNemar's chi-squared tests, PCCs and kappa statistics were performed to analyse and compare the distribution of visits among all disease activity states and indices. RESULTS: A strong correlation was found between the three indices throughout the 14 440 visits: r = 0.874 for DAS28/CDAI, r = 0.877 for DAS28/SDAI and r = 0.984 for CDAI/SDAI (all PCCs with P < 0.0001). However, when categorization in the different disease activity states was analysed, McNemar's chi-squared tests and PCCs revealed significant disagreement between the cut-offs of the three indices. CONCLUSION: DAS28, CDAI and SDAI cut-offs do not translate into the same clinical information in Reuma.pt. Although this might be expected for the original DAS28 cut-offs, when compared with CDAI and SDAI significant disagreement was also found for the DAS28 modified cut-offs. For visits where patients are in CDAI or SDAI remission, we also find disagreement between these two indices, which may contradict previous conclusions that acute phase reactants add little to composite disease activity indices for RA.


Assuntos
Artrite Reumatoide/diagnóstico , Índice de Gravidade de Doença , Proteínas de Fase Aguda/metabolismo , Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Portugal , Sistema de Registros , Tempo para o Tratamento
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