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1.
Acta Reumatol Port ; 46(1): 40-54, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33820895

RESUMO

BACKGROUND: Patients with rheumatoid arthritis (RA) report significant levels of disease impact, which are improved, but not fully abrogated by immunosuppressive therapy, even when remission is achieved. This imposes the need for adjuvant interventions targeting the uncontrolled domains of disease impact. Non-pharmacological interventions are widely used for this purpose, but they have not been the object of professional recommendations or guidelines. OBJECTIVE: To propose multidisciplinary recommendations to inform clinical care providers regarding the employment of non-pharmacological and non-surgical interventions in the management of patients with RA. METHODS: The EULAR standardized operating procedures for the development of recommendations were followed. First, a systematic literature review was performed. Then, a multidisciplinary Technical Expert Panel (TEP) met to develop and discuss the recommendations and research agenda. For each developed recommendation i) the level of evidence and grade of recommendation were determined, and ii) the level of agreement among TEP members was set. A recommendation was adopted if approved by ≥75% of the TEP members, and the level of agreement was considered high when ≥8. All relevant national societies were included in this construction process to attain their endorsement. RESULTS: Based on evidence and expert opinion, the TEP developed and agreed on five overarching principles and 12 recommendations for non-pharmacological and non-surgical interventions in patients with RA. The mean level of agreement between the TEP members ranged between 8.5 and 9.9. The recommendations include a broad spectrum of intervention areas, such as exercise, hydrokinesiotherapy, psychological interventions, orthoses, education, general management of comorbidities, among others; and they set the requirements for their application. CONCLUSIONS: These recommendations are based on the consensus judgment of clinical experts from a wide range of disciplines and patients' representatives from Portugal. Given the evidence for effectiveness, feasibility and safety, non-pharmacological and non-surgical interventions should be an integral part of standard care for people with RA. It is hoped that these recommendations should be widely implemented in clinical practice. The target audience for these recommendations includes all health professionals involved in the care of patients with RA. The target patient population includes adult Portuguese people with RA.

2.
J Clin Epidemiol ; 135: 125-135, 2021 Mar 07.
Artigo em Inglês | MEDLINE | ID: mdl-33691153

RESUMO

OBJECTIVES: The number of published clinical practice guidelines related to COVID-19 has rapidly increased. This study explored if basic methodological standards of guideline development have been met in the published clinical practice guidelines related to COVID-19. STUDY DESIGN AND SETTING: Rapid systematic review from February 1 until April 27, 2020 using MEDLINE [PubMed], CINAHL [Ebsco], Trip and manual search, including all types of healthcare workers providing any kind of healthcare to any patient population in any setting. RESULTS: There were 1342 titles screened and 188 guidelines included. The highest average AGREE II domain score was 89% for scope and purpose, the lowest for rigor of development (25%). Only eight guidelines (4%) were based on a systematic literature search and a structured consensus process by representative experts (classified as the highest methodological quality). The majority (156; 83%) was solely built on an informal expert consensus. A process for regular updates was described in 27 guidelines (14%). Patients were included in the development of only one guideline. CONCLUSION: Despite clear scope, most publications fell short of basic methodological standards of guideline development. Clinicians should use guidelines that include up-to-date information, were informed by stakeholder involvement, and employed rigorous methodologies.

3.
RMD Open ; 7(1)2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33547229

RESUMO

OBJECTIVE: The rheumatoid arthritis impact of disease (RAID) questionnaire comprises seven patient-important domains of disease impact (pain, function, fatigue, sleep disturbance, emotional well-being, physical well-being, coping). RAID was validated as a pooled-weighted score. Its seven individual items separately could provide a valuable tool in clinical practice to guide interventions targeting the patient's experience of the disease. The aim was to separately assess the psychometric properties of each of the seven numeric rating scale (NRS) of the RAID (RAID.7). MATERIAL AND METHODS: Post hoc analyses of data from the cross-sectional RAID study and from the Rainbow study, an open-label 12-week trial of etanercept in patients with RA. Construct validity of each NRS was assessed cross-sectionally in the RAID data set by Spearman's correlation with the respective external instrument of reference. Using the rainbow data set, we assessed reliability through intraclass correlation coefficient between the screening and the baseline visits and responsiveness (sensitivity to change) by standardised response mean between baseline and 12 weeks. RESULTS: A total of 671 patients with RA with features of established disease were analysed, 563 and 108 from RAID and Rainbow, respectively. The NRS correlated moderately to strongly with the respective external instrument of reference (r=0.62-0.81). Reliability ranged from 0.64 (0.51-0.74) (pain) to 0.83 (0.76-0.88) (sleep disturbance) and responsiveness from 0.93 (0.73-1.13) (sleep disturbance) to 1.34 (1.01-1.64) (pain). CONCLUSION: The separate use of the individual NRS of RAID (RAID.7) is valid, feasible, reliable and sensitive to change, representing an opportunity to improve the assessment and treatment of disease impact with minimal questionnaire burden. TRIAL REGISTRATION NUMBER: NCT00768053.

4.
Ann Rheum Dis ; 2021 Jan 22.
Artigo em Inglês | MEDLINE | ID: mdl-33483318

RESUMO

OBJECTIVE: To produce European League Against Rheumatism (EULAR) recommendations for the reporting of ultrasound studies in rheumatic and musculoskeletal diseases (RMDs). METHODS: Based on the literature reviews and expert opinion (through Delphi surveys), a taskforce of 23 members (12 experts in ultrasound in RMDs, 9 in methodology and biostatistics together with a patient research partner and a health professional in rheumatology) developed a checklist of items to be reported in every RMD study using ultrasound. This checklist was further refined by involving a panel of 79 external experts (musculoskeletal imaging experts, methodologists, journal editors), who evaluated its comprehensibility, feasibility and comprehensiveness. Agreement on each proposed item was assessed with an 11-point Likert scale, grading from 0 (total disagreement) to 10 (full agreement). RESULTS: Two face-to-face meetings, as well as two Delphi rounds of voting, resulted in a final checklist of 23 items, including a glossary of terminology. Twenty-one of these were considered 'mandatory' items to be reported in every study (such as blinding, development of scoring systems, definition of target pathologies) and 2 'optional' to be reported only if applicable, such as possible confounding factors (ie, ambient conditions) or experience of the sonographers. CONCLUSION: An EULAR taskforce developed a checklist to ensure transparent and comprehensive reporting of aspects concerning research and procedures that need to be presented in studies using ultrasound in RMDs. This checklist, if widely adopted by authors and editors, will greatly improve the interpretability of study development and results, including the assessment of validity, generalisability and applicability.

5.
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.

7.
Ann Rheum Dis ; 2020 Oct 06.
Artigo em Inglês | MEDLINE | ID: mdl-33023964

RESUMO

OBJECTIVES: To determine the impact of excluding patient global assessment (PGA) from the American College of Rheumatology (ACR)/European League Against Rheumatism (EULAR) Boolean remission criteria, on prediction of radiographic and functional outcome of rheumatoid arthritis (RA). METHODS: Meta-analyses using individual patient data from randomised controlled trials testing the efficacy of biological agents on radiographic and functional outcomes at ≥2 years. Remission states were defined by 4 variants of the ACR/EULAR Boolean definition: (i) tender and swollen 28-joint counts (TJC28/SJC28), C reactive protein (CRP, mg/dL) and PGA (0-10=worst) all ≤1 (4V-remission); (ii) the same, except PGA >1 (4V-near-remission); (iii) 3V-remission (i and ii combined; similar to 4V, but without PGA); (iv) non-remission (TJC28 >1 and/or SJC28 >1 and/or CRP >1). The most stringent class achieved at 6 or 12 months was considered. Good radiographic (GRO) and functional outcome (GFO) were defined as no worsening (ie, change in modified total Sharp score (ΔmTSS) ≤0.5 units and ≤0.0 Health Assessment Questionnaire-Disability Index points, respectively, during the second year). The pooled probabilities of GRO and GFO for the different definitions of remission were estimated and compared. RESULTS: Individual patient data (n=5792) from 11 trials were analysed. 4V-remission was achieved by 23% of patients and 4V-near-remission by 19%. The probability of GRO in the 4V-near-remission group was numerically, but non-significantly, lower than that in the 4V-remission (78 vs 81%) and significantly higher than that for non-remission (72%; difference=6%, 95% CI 2% to 10%). Applying 3V-remission could have prevented therapy escalation in 19% of all participants, at the cost of an additional 6.1%, 4.0% and 0.7% of patients having ΔmTSS >0.0, >0.5 and >5 units over 2 years, respectively. The probability of GFO (assessed in 8 trials) in 4V-near-remission (67%, 95% CI 63% to 71%) was significantly lower than in 4V-remission (78%, 74% to 81%) and similar to non-remission (69%, 66% to 72%). CONCLUSION: 4V-near-remission and 3V-remission have similar validity as the original 4V-remission definition in predicting GRO, despite expected worse prediction of GFO, while potentially reducing the risk of overtreatment. This supports further exploration of 3V-remission as the target for immunosuppressive therapy complemented by patient-oriented targets.

9.
Artigo em Inglês | MEDLINE | ID: mdl-32339449

RESUMO

OBJECTIVES: To determine if patient global assessment (PGA), as part of Boolean-based definition of remission and individually considered, over the first year of disease course had a significant relationship with structural progression over 3 years in patients with early arthritis (EA). METHODS: Prospective, observational study using ESPOIR cohort data. Remission states were defined as (a) 4v-remission: tender (TJC28), swollen 28-joint counts (SJC28), C-Reactive protein (mg/dL), and PGA (0-10) all ≤1; (b) PGA-near-remission: same parameters with only PGA>1/10; (c) 3v-remission (sum of previous groups) or (d) non-remission. The strictest status satisfied both at 6- and 12-months was considered. Radiographic progression was determined as a change in total Sharp-van der Heijde score from baseline to 3 years (ΔSHS) ≥5 points. The predictive capacities for radiographic damage of different remission definitions were assessed by Odds Ratio (OR). The association between each individual component of remission with ΔSHS was tested through multivariate linear regression analyses. RESULTS: Among 520 patients, 7% achieved 4v-remission and 12% PGA-near-remission. Radiographic progression was observed in 29% of patients in 4v-remission (OR versus non-remission, OR=0.32 [95%CI:0.15-0.68]) and in 45% of patients in PGA-near-remission (OR=0.65 [0.38-1.11]); the comparison was not statistically different (OR=0.49 [0.20-1.18]). In 3v-remission it was observed in 39%. Of the individual components, only SJC28 and CRP were associated with radiographic progression. CONCLUSION: All definitions of remission led to low structural degradation in EA: 4v-remission led to less progression than PGA-near-remission but without a statistically significant difference. Both 4v-remission and 3v-remission appear useful targets when aiming at structural non-progression.

11.
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
12.
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
13.
Clin Exp Rheumatol ; 38(2): 282-288, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31365330

RESUMO

OBJECTIVES: To assess the educational needs of people with ankylosing spondylitis (AS) and psoriatic arthritis (PsA), test differences across patient subgroups and identify factors independently associated with their educational needs. METHODS: This was a cross-sectional analytic study. Patients with AS and PsA completed the Portuguese version of the Educational Needs Assessment Tool (PortENAT). Data were Rasch-transformed before descriptive and inferential analyses were undertaken. Univariable and multivariable analyses were used to determine differences between patient subgroups and factors independently associated with their educational needs. RESULTS: The study included 121 patients with AS and 132 with PsA. The level of educational needs varied by diagnostic group, but higher needs for both subgroups were reported regarding the "Disease process", "Feelings" and "Managing pain" domains. Overall, patients with AS had a higher level of educational needs than those with PsA. In both diagnostic groups, female gender was independently associated with higher educational needs. In the PsA group, a shorter disease duration was independently associated with higher educational needs in the following domains: "Managing pain", "Movement" and "Feelings". CONCLUSIONS: Educational needs vary by diagnostic group, gender and disease duration. These differences merit consideration in the design of patient education interventions.


Assuntos
Artrite Psoriásica , Educação de Pacientes como Assunto , Espondilite Anquilosante , Artrite Psoriásica/psicologia , Estudos Transversais , Feminino , Humanos , Masculino , Determinação de Necessidades de Cuidados de Saúde , Manejo da Dor , Espondilite Anquilosante/psicologia
14.
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
15.
J Rheumatol ; 47(1): 20-27, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31043552

RESUMO

OBJECTIVE: To compare the association between different remission criteria and physical function in patients with rheumatoid arthritis followed in clinical practice. METHODS: Longitudinal data from the METEOR database were used. Seventeen definitions of remission were tested: American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) Boolean-based; Simplified/Clinical Disease Activity Index (SDAI/CDAI); and 14 Disease Activity Score (DAS)-based definitions. Health Assessment Questionnaire (HAQ) ≤ 0.5 was defined as good functional status. Associations were investigated using generalized estimating equations. Potential confounders were tested and sensitivity analyses performed. RESULTS: Data from 32,915 patients (157,899 visits) were available. The most stringent definition of remission was the ACR/EULAR Boolean-based definition (1.9%). The proportion of patients with HAQ ≤ 0.5 was higher for the most stringent definitions, although it never reached 100%. However, this also meant that, for the most stringent criteria, many patients in nonremission had HAQ ≤ 0.5. All remission definitions were associated with better function, with the strongest degree of association observed for the SDAI (adjusted OR 3.36, 95% CI 3.01-3.74). CONCLUSION: The 17 definitions of remission confirmed their validity against physical function in a large international clinical practice setting. Achievement of remission according to any of the indices may be more important than the use of a specific index. A multidimensional approach, targeted at wider goals than disease control, is necessary to help all patients achieve the best possible functional status.

16.
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
17.
Arthritis Care Res (Hoboken) ; 71(10): 1317-1325, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-30821895

RESUMO

OBJECTIVE: There is an ongoing debate about excluding patient's global assessment (PtGA) from composite and Boolean-based definitions of rheumatoid arthritis (RA) remission. This study aimed at determining the influence of PtGA on RA disease states, exploring differences across countries, and understanding the association between PtGA, measures of disease impact (symptoms), and markers of disease activity (inflammation). METHODS: Cross-sectional data from the Measurement of Efficacy of Treatment in the Era of Outcome in Rheumatology international database were used. We calculated the proportion of patients failing American College of Rheumatology/European League Against Rheumatism Boolean-based remission (4-variable remission) solely due to PtGA (PtGA-near-remission) in the overall sample and in the most representative countries (i.e., those with >3,000 patients in the database). Multivariable linear regression models were used to identify the main determinants of PtGA, grouped in predominantly inflammatory impact factors (28 tender joint counts, 28 swollen joint counts, and C-reactive protein level) and disease impact factors (pain and function). RESULTS: This study included 27,768 patients. Excluding PtGA from the Boolean-based definition (3-variable remission) increased the remission rate from 5.8% to 15.8%. The rate of PtGA-near-remission varied considerably between countries, from 1.7% in India to 17.9% in Portugal. One-third of the patients in PtGA-near-remission group scored PtGA >4 of 10. Pain and function were the main correlates of PtGA, with inflammation-related variables contributing less to the model (R2 = 0.57). CONCLUSION: PtGA is moderately related to joint inflammation overall, but only weakly so in low levels of disease activity. A considerable proportion of patients otherwise in biologic remission still perceive high PtGA, putting them at risk of excessive immunosuppressive treatment.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Reumatoide/tratamento farmacológico , Artrite Reumatoide/epidemiologia , Gerenciamento de Dados/métodos , Saúde Global , Internacionalidade , Adulto , Idoso , Artrite Reumatoide/diagnóstico , Estudos Transversais , Gerenciamento de Dados/tendências , Feminino , Saúde Global/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Sistema de Registros , Indução de Remissão
19.
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
20.
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
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