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The Psoriatic Arthritis Impact of Disease (PsAID-12) questionnaire, a recommended measure of patient-reported impact for psoriatic arthritis (PsA), was initially developed in Europe and may lack universal validity. Recognizing the need for a culturally appropriate tool for Arab patients, this study aimed to TranslAte, CulTurally adapt, and validate the PsAID in ArabIC (TACTIC). The PsAID-12 was translated into Arabic using a rigorous process of double translation, back-translation, and cognitive debriefing. The Arabic version was then validated through a study conducted in 13 Arab countries in 2022. Participants were consecutive literate adult patients diagnosed with PsA and fulfilling the CASPAR criteria. Collected data included PsAID-12, disease activity, and legacy patient-reported outcomes. Psychometric properties, such as internal consistency, construct validity, and test-retest reliability, were examined. Factors associated with high PsAID-12 total scores (> 4) were explored using multivariable binary logistic regression. A culturally adapted Arabic PsAID-12 questionnaire was achieved with minor rephrasing. The validation study included 554 patients from 13 countries (mean age 45 years, 59% females), with a mean PsAID score of 3.86 (SD 2.33). The Arabic PsAID-12 demonstrated excellent internal consistency (Cronbach's α = 0.95), and correlations with other measures ranged from 0.63 to 0.78. Test-retest reliability (N = 138 patients) was substantial (intraclass correlation coefficient, ICC 0.90 [0.86-0.93]; Cohen's kappa 0.80). Factors associated with a high PsAID score were disability (odds ratio, OR 3.15 [2.03-4.89]), depression (OR 1.56 [1.35-1.81]), widespread pain (OR 1.31 [1.12-1.53]), and disease activity (OR 1.29 [1.13-1.47]). Pain and fatigue were identified as the most impactful PsAID-12 domains for PsA patients. The Arabic PsAID is a valid and reliable measure that reflects the priorities of patients with PsA. PsAID scores correlated with disease activity and legacy outcome measures, as expected, indicating PsAID is a consistent measure of PsA impact across cultures. These findings highlight the potential of the Arabic PsAID in improving the care provided to Arabic-speaking patients worldwide.
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Artrite Psoriásica , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Masculino , Artrite Psoriásica/diagnóstico , Artrite Psoriásica/psicologia , Reprodutibilidade dos Testes , Árabes , Oriente Médio , Inquéritos e Questionários , Dor , PsicometriaRESUMO
The use of online surveys as a recruitment tool for clinical research has recently expanded; nevertheless, optimal recruitment strategies remain poorly identified. Objectives. The study aimed to identify the most effective recruitment strategies for online research studies and to determine the optimal survey channels for obtaining patients' responses. This is a post-hoc analysis of the ARCOVAX (ArLAR COVID Vaccination) study. Multiple recruitment strategies were disseminated in Arabic, English, and French. The proportion of enrolled patients was correlated with each strategy. Channels used by patients to complete the survey were divided into three categories (social media (SoMe), doctor, and patients' associations). These channels were correlated with the patients' characteristics and the country's Gross Domestic Product (GDP). A total of 1595 patients from 19 Arab countries completed the survey. Patients' mean age was 39 years, 73.2% (1159) were females, 17.8% (284) had a university education level and 93.1% (1468) answered the survey in Arabic. The most effective recruitment strategies were personalized WhatsApp reminders to recruiters (30% of enrolled patients), technical support in response to access issues (27%) and sharing recruitment status by country on a WhatsApp group (24%). The channels used to complete the survey were: SoMe in 45% (711), doctor in 40% (647), and patients' associations in 8.5% (233), and correlated with age and GDP. To optimize recruitment, it is recommended to combine multiple strategies and channels, use the native language and be active (mobilize teams), reactive (provide prompt technical support), and proactive (share regular updates and reminders).
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COVID-19 , Doenças Musculoesqueléticas , Mídias Sociais , Feminino , Humanos , Adulto , Masculino , Inquéritos e Questionários , VacinaçãoRESUMO
The Arab League of Associations for Rheumatology (ArLAR) Research Group (ARCH) conducted this study to investigate the number of current practicing rheumatologists in the Arab countries, to estimate the projected number of rheumatologists in 10 years, and to evaluate the current workload, practice profile, consultation waiting time, and geographical mobilities of these rheumatologists. This cross-sectional survey study was conducted in 16 Arab countries in two parts. The first survey was addressed nominally to national societies to estimate the current and projected workforce. The second was an anonymous e-survey elaborated by the study steering committee on the Google Forms platform and distributed to Arab rheumatologists using social media, WhatsApp, and mass e-mails to evaluate their practice. The mean number of rheumatologists in Arab countries was 0.84 per 100,000 inhabitants (mean age 47.5 years, 55% females), ranging from 0.06 (Sudan) to 1.86 (Tunisia). The number of rheumatologists is expected to increase by 50% in 2032. Nevertheless, a 20% increase in population associated with an increase in demand is also expected. Data from 446 rheumatologists (mean age 43.9 years, 60.5% females) revealed that 72% worked full-time, and 53% were employed in the public sector only. The average waiting time for a rheumatology consultation was 19.9 days. Of 394 rheumatologists, 19% obtained their rheumatology diplomas from non-Arab countries, and 47% of Gulf rheumatologists were non-citizen physicians. Considering local demographic disparities, healthcare system differences, and geographical mobilities, national authorities are advised to implement effective intervention plans to optimize the rheumatology workforce.
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To develop Best Practice Guidelines (BPG) for the use of Telehealth in Rheumatology in the Arab region, to identify the main barriers and facilitators of telehealth, and to provide rheumatologists with a practical toolkit for the implementation of telehealth. Guidelines were drafted by a core steering committee from the Arab League of Associations for Rheumatology (ArLAR) after performing a literature search. A multidisciplinary task force (TF), including 18 rheumatologists, 2 patients, and 2 regulators from 15 Arab countries, assessed the BPG using 3 rounds of anonymous online voting by modified Delphi process. The statements were included in the final BPG without further voting if ≥ 80% of TF members indicated high agreement. The voting on barriers and facilitators was performed through one voting round. The toolkit was developed based on available literature and discussions during the Delphi rounds. Four General Principles and twelve Statements were formulated. A teleconsultation was specifically defined for the purpose of these guidelines. The concept of choice in telehealth was highlighted, emphasizing patient confidentiality, medical information security, rheumatologist's clinical judgment, and local jurisdictional regulations. The top barrier for telehealth was the concern about the quality of care. The toolkit emphasized technical aspects of teleconsultation and proposed a triage system. The ArLAR BPG provide rheumatologists with a series of strategies about the most reliable, productive, and rational approaches to apply telehealth.
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Reumatologia/métodos , Telemedicina/métodos , Mundo Árabe , Atenção à Saúde/normas , Técnica Delphi , HumanosRESUMO
BACKGROUND: Burnout is frequent among physicians and seems to be underestimated among rheumatologists. OBJECTIVE: To estimate the frequency of burnout in a sample of rheumatologists practising in the Arab countries and determine its associated factors. METHODS: This was a descriptive cross-sectional study conducted by the Arab League of Associations for Rheumatology (ArLAR research group) using an anonymous electronic questionnaire set up on the Google Forms platform. All Arab rheumatologists and rheumatology fellows were invited to participate in the spring of 2022 via ArLAR social media accounts, societies' WhatsApp groups, and mass emails. Burnout was defined by at least one positive domain of the Maslach Burnout Inventory (MBI) (Emotional exhaustion, Depersonalization, and Personal accomplishment). The final score was correlated to socio-demographic factors using a multivariable binary logistic regression. RESULTS: The study included 445 rheumatologists and rheumatology fellows with an average age of 45.2 years (SD 11.5); 61.8% were men. The frequency of burnout among rheumatologists was 61.3% and was driven by low personal accomplishment scores (58.1%). Younger age (OR 1.92 (95%CI 1.20-3.08)), dissatisfaction with the specialty (OR 2.036 (95% CI 1.20-3.46)), and low income (OR 2.26 (95% CI 1.01-5.10)) were associated with burnout. CONCLUSION: The frequency of burnout in a sample of rheumatologists in Arab countries is very high, driven by low personal accomplishment scores and associated with a low income, dissatisfaction with the specialty and younger age. Some associated factors might be modifiable, thus reducing the burden of burnout on rheumatologists and on the healthcare system. Key Points ⢠The frequency of burnout in a sample of Arab rheumatologists was 61.3% according to the MBI. ⢠The score was mainly driven by low personal accomplishment scores (58.1%). ⢠Younger age, dissatisfaction with the specialty, and low income were associated with burnout. ⢠Acting upon modifiable risk factors would help reducing the burden of burnout on rheumatologists and on the healthcare system.
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Esgotamento Profissional , Testes Psicológicos , Reumatologia , Autorrelato , Masculino , Humanos , Pessoa de Meia-Idade , Feminino , Reumatologistas , Estudos Transversais , Árabes , Esgotamento Psicológico , Esgotamento Profissional/epidemiologia , Esgotamento Profissional/psicologia , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: The diagnosis and treatment of spondyloarthritis (SpA) is a global challenge, with no cure available. Adherence to treatment with biologic disease-modifying antirheumatic drugs, such as the tumor necrosis factor-α inhibitor etanercept, varies among patients with SpA. Inadequate or poor adherence to treatment may have a negative effect on clinical outcome and quality of life and may lead to greater health-related expense. METHODS: This observational, retrospective study used real-world patient data from the Iraq National Center of Rheumatology database to retrospectively assess long-term adherence to etanercept, specifically evaluating 1- and 7-year adherence to etanercept among Iraqi patients with SpA. RESULTS: In total, data from 763 patients were included in the analysis. The majority of patients were men (82.2%). Mean disease duration at baseline was 5.85 years; 84.0% of patients received concomitant steroids, and 14.2% were treated with concomitant methotrexate. Measures of disease activity and functional status (mean ± SD) at baseline based on the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) and the Bath Ankylosing Spondylitis Functional Index (BASFI) were 8.06 ± 0.83 (range 6.0-9.5) and 7.75 ± 1.12 (range 4.1-9.7), respectively. Around 30% of patients initiated etanercept treatment within 1 year of diagnosis. After 1 and 7 years, 91.7% (700/763) and 60.6% (80/132) of patients were adherent to etanercept treatment. Mean (± SD) changes from baseline in BASDAI and BASFI scores for adherent versus non-adherent patients at 1 year were 6.73 (± 1.90) versus 4.20 (± 1.85) (p = 0.0001) and 6.43 (± 2.04) versus 4.18 (± 1.88) (p = 0.0001), respectively. CONCLUSIONS: These results suggest that Iraqi patients with SpA benefit from long-term adherence to etanercept treatment; however, additional analyses are needed to further assess the reasons for treatment discontinuation, which may include disease remission. TRIAL REGISTRATION: ClinicalTrials.gov: NCT04507776.
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OBJECTIVE: To evaluate the impact of the coronavirus disease 2019 (COVID-19) pandemic on rheumatology practice. METHOD: A cross-sectional web survey was designed by the members of the Arab League of Associations for Rheumatology (ArLAR), validated by its scientific committee and disseminated through e-mail and social media. It included close-ended questions about the impact of the pandemic on the rheumatology activities, including outpatient visits and hospitalizations (in percentage, 100% corresponds to complete suspension) and open-ended questions about unmet needs. Univariate and multivariable logistic regression analyses were used to evaluate the predictors of impact. Suggestions were developed to improve the practice. RESULTS: A total of 858 rheumatologists were included in the analysis (27.3% of registered in ArLAR), 37% were 35-44 years old, 60% were females, and 48% worked in the private sector. The impact of COVID-19 was a decrease of 69% in hospitalizations, 65% in outpatient clinic, 56% in infusion centers, and 43% in income. It was associated with the region (highest in the Gulf), use of telemedicine, impact on income and practice sector (lowest in private). There was a hydroxychloroquine shortage in 47%. Telemedicine was mostly based on traditional telephone contacts and e-mails and reimbursed in 12%. Fifteen rheumatologists (1.8%) were infected and 156 cases of COVID-19 were reported among patients. The top-cited unmet needs in rheumatology practice were access to drugs and a telemedicine platform. CONCLUSIONS: The negative impact of the COVID-19 pandemic on rheumatology practice may compromise rheumatic diseases control. Better access to drugs and providing telemedicine platforms are recommended to improve the practice. Key Points ⢠The COVID-19 pandemic had a significant negative impact on the rheumatology practice, including access to outpatient clinic, hospitalization, and to anchor drugs. ⢠The compromised access to rheumatology care may jeopardize the control of chronic rheumatic diseases and the long-term prognosis. ⢠Better access to drugs and providing telemedicine platforms are strongly recommended.
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Assistência Ambulatorial , Infecções por Coronavirus , Atenção à Saúde , Hospitalização , Pandemias , Pneumonia Viral , Reumatologia , Telemedicina , Adulto , Idoso , Antirreumáticos/provisão & distribuição , Mundo Árabe , Betacoronavirus , COVID-19 , Feminino , Humanos , Hidroxicloroquina/provisão & distribuição , Renda , Masculino , Pessoa de Meia-Idade , Padrões de Prática Médica , Mecanismo de Reembolso , SARS-CoV-2 , Inquéritos e Questionários , TelefoneRESUMO
AIM: To evaluate the impact of the coronavirus disease 2019 pandemic (COVID-19) on the access to rheumatology care for patients with chronic rheumatic diseases (CRD) in the Arab countries. METHOD: A web-based cross-sectional survey was designed by the Arab Adult Arthritis Awareness group (AAAA) consisting of 16 rheumatologists representing countries from the Arab League of Associations for Rheumatology (ArLAR) and was validated by the ArLAR scientific committee. The survey was disseminated online through social media and patients' association channels between May 8 and May 22, 2020. The steering committee developed recommendations to improve the care of patients with CRD during the COVID-19 pandemic. RESULTS: A total of 2163 patients were included in the analysis; 72% were female; mean age was 40 years (SD 11.9). The Levant, the Gulf, and North Africa contributed almost equally to the sample. The pandemic had a significant negative impact on rheumatology visits in 82% of cases, access to hydroxychloroquine (47%), and chronic medication persistency (28%). The negative impact on rheumatology visits was associated with female gender, country, medication non-persistency, isolation due to COVID-19, and impact on mental health. Sixty-one patients (2.8%) stated that they had COVID-19, 5% said that a close contact was infected, and 47% were in isolation because of COVID-19. CONCLUSION: The current study highlights the deleterious consequences of the COVID-19 pandemic on the continuity of rheumatology care. Therefore, an action plan, including establishing a telemedicine platform, securing drug availability, and promoting medication persistence through the appropriate communication channels, is strongly recommended.