How to optimize recruitment strategies of patients with rheumatic and musculoskeletal diseases for online surveys: experience from an international study.

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).

The rheumatology workforce in the Arab countries: current status, challenges, opportunities, and future needs from an ArLAR cross-sectional survey.

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.

Telehealth in rheumatology: the 2021 Arab League of Rheumatology Best Practice Guidelines.

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.

Nurse-led care for the management of rheumatoid arthritis: a review of the global literature and proposed strategies for implementation in Africa and the Middle East.

Globally, increasing demand for rheumatology services has led to a greater reliance on non-physician healthcare professionals (HCPs), such as rheumatology nurse specialists, to deliver care as part of a multidisciplinary team. Across Africa and the Middle East (AfME), there remains a shortage of rheumatology HCPs, including rheumatology nurses, which presents a major challenge to the delivery of rheumatology services, and subsequently the treatment and management of conditions such as rheumatoid arthritis (RA). To further explore the importance of nurse-led care (NLC) for patients with RA and create a set of proposed strategies for the implementation of NLC in the AfME region, we used a modified Delphi technique. A review of the global literature was conducted using the PubMed search engine, with the most relevant publications selected. The findings were summarized and presented to the author group, which was composed of representatives from different countries and HCP disciplines. The authors also drew on their knowledge of the wider literature to provide context. Overall, results suggest that NLC is associated with improved patient perceptions of RA care, and equivalent or superior clinical and cost outcomes versus physician-led care in RA disease management. Expert commentary provided by the authors gives insights into the challenges of implementing nurse-led RA care. We further report practical proposed strategies for the development and implementation of NLC for patients with RA, specifically in the AfME region. These proposed strategies aim to act as a foundation for the introduction and development of NLC programs across the AfME region.

Perceptions of patients with rheumatoid arthritis about self-assessment of disease activity after watching an educational video: a qualitative pilot study from the AUTO-DAS in Middle Eastern Arab countries project.

To evaluate the perceptions of patients with rheumatoid arthritis (RA) about self-assessment of their disease activity after watching an educational video. Consecutive patients with RA consulting their rheumatologist in six Middle Eastern Countries were invited to watch an educational video developed to teach self-assessment using Disease Activity Score (DAS-28). Then, a rheumatology nurse conducted a semi-structured interview and collected the patients' perception about the understanding of the video, feasibility, capability and confidence in performing self-assessment using Likert-type items. The degree of confidence with self-assessment was correlated to the patients' socio-demographic characteristics. Sixty-two patients were included and had an overall positive reaction to the video. It was easy to understand in 96% and helped facilitate self-assessment in 92% of cases. Self-assessment was considered totally feasible in 74%, and 66% of patients were capable of always doing it, with a confidence of 60% (always) to 34% (sometimes). Confidence was associated with a higher educational level. Nevertheless, 77% of patients felt that the self-assessment would not fully replace the physician's visit. Open-ended questions identified five themes: better understanding of the disease, easier communication with the rheumatologist, less consultation time, difficulty with the scoring part and importance of practice. Patients with RA felt that self-assessment was feasible and helpful in understanding RA, improving communication with the rheumatologist and shortening the visit time.

Adaptation of the 2015 American College of Rheumatology treatment guideline for rheumatoid arthritis for the Eastern Mediterranean Region: an exemplar of the GRADE Adolopment.

BACKGROUND: It has been hypothesized that adaptation of health practice guidelines to the local setting is expected to improve their uptake and implementation while cutting on required resources. We recently adapted the published American College of Rheumatology (ACR) Rheumatoid Arthritis (RA) treatment guideline to the Eastern Mediterranean Region (EMR). The objective of this paper is to describe the process used for the adaptation of the 2015 ACR guideline on the treatment of RA for the EMR. METHODS: We used the GRADE-Adolopment methodology for the guideline adaptation process. We describe in detail how adolopment enhanced the efficiency of the following steps of the guideline adaptation process: (1) groups and roles, (2) selecting guideline topics, (3) identifying and training guideline panelists, (4) prioritizing questions and outcomes, (5) identifying, updating or conducting systematic reviews, (6) preparing GRADE evidence tables and EtD frameworks, (7) formulating and grading strength of recommendations, (8) using the GRADEpro-GDT software. RESULTS: The adolopment process took 6 months from January to June 2016 with a project coordinator dedicating 40% of her time, and the two co-chairs dedicating 5% and 10% of their times respectively. In addition, a research assistant worked 60% of her time over the last 3 months of the project. We held our face-to-face panel meeting in Qatar. Our literature update included five newly published trials. The certainty of the evidence of three of the eight recommendations changed: one from moderate to very low and two from low to very low. The factors that justified a very low certainty of the evidence in the three recommendations were: serious risk of bias and very serious imprecision. The strength of five of the recommendations changed from strong to conditional. The factors that justified the conditional strength of these 5 recommendations were: cost (n = 5 [100%]), impact on health equities (n = 4 [80%]), the balance of benefits and harms (n = 1 [20%]) and acceptability (n = 1 [20%]). CONCLUSION: This project confirmed the feasibility of GRADE-Adolopment. It also highlighted the value of collaboration with the organization that had originally developed the treatment guideline. We discuss the implications for both guideline adaptation and future research to advance the field.

Case-Based Review of Osteonecrosis of the Jaw (ONJ) and Application of the International Recommendations for Management From the International Task Force on ONJ.

Osteonecrosis of the jaw (ONJ) has been associated with antiresorptive therapy in both oncology and osteoporosis patients. This debilitating condition is very rare and advances in diagnosis and management may now effectively reduce the risk of its development and offer valuable treatment options for affected patients. This paper provides a case-based review of ONJ and application of the International Task Force on ONJ (referred to as the "Task Force") recommendations for the diagnosis and management of ONJ. The Task Force was supported by 14 international societies and achieved consensus from representatives of these multidisciplinary societies on key issues pertaining to the diagnosis and management of ONJ. The frequency of ONJ in oncology patients receiving oncology doses of bisphosphonate (BP) or denosumab is estimated at 1%-15%, and the frequency in the osteoporosis patient population receiving much lower doses of BP or denosumab is estimated at 0.001%-0.01%. Although the diagnosis of ONJ is primarily clinical, imaging may be helpful in confirming the diagnosis and staging. In those with multiple risk factors for ONJ for whom major invasive oral surgery is being planned, interruption of BP or denosumab therapy (in cancer patients) is advised, if possible, before surgery, until the surgical site heals. Major oral surgery in this context could include multiple extractions if surgical extractions are required, not simple forceps extractions. ONJ development may be reduced by optimizing oral hygiene and postoperatively using topical and systemic antibiotics as appropriate. Periodontal disease should be managed before starting oncology doses of BP or denosumab. Local debridement may be successful in disease unresponsive to conservative therapy. Successful surgical intervention has been reported in those with stage 3 disease; less severe disease is best managed conservatively. Teriparatide may be helpful in healing ONJ lesions and may be considered in osteoporosis patients at a high fracture risk in the absence of contraindications. Resumption of BP or denosumab therapy following healing of ONJ lesions is recommended, and there have not been reports of subsequent local recurrence.

Burnout syndrome among rheumatologists and rheumatology fellows in Arab countries: an ArLAR multinational study.

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.

APLAR recommendations on the practice of telemedicine in rheumatology.

INTRODUCTION: The COVID-19 pandemic led to rapid and widespread adoption of telemedicine in rheumatology care. The Asia Pacific League of Associations for Rheumatology (APLAR) working group was tasked with developing evidence-based recommendations for rheumatology practice to guide maintenance of the highest possible standards of clinical care and to enable broad patient reach. MATERIALS AND METHODS: A systematic review of English-language articles related to telehealth in rheumatology was conducted on MEDLINE/PubMed, Web Of Science and Scopus. The strength of the evidence was graded using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) approach as well as the Oxford Levels of Evidence. The recommendations were developed using a modified Delphi technique to establish consensus. RESULTS: Three overarching principles and 13 recommendations were developed based on identified literature and consensus agreement. The overarching principles address telemedicine frameworks, decision-making, and modality. Recommendations 1-4 address patient suitability, triage, and when telemedicine should be offered to patients. Recommendations 5-10 cover the procedure, including the means, data safety, fail-safe mechanisms, and treat-to-target approach. Recommendations 11-13 focus on training and education related to telerheumatology. CONCLUSION: These recommendations provide guidance for the approach and use of telemedicine in rheumatology care to guide highest possible standards of clinical care and to enable equitable patient reach. However, since evidence in telemedicine care in rheumatology is limited and emerging, most recommendations will need further consideration when more data are available.

Multi-ancestry genome-wide association analyses identify novel genetic mechanisms in rheumatoid arthritis.

Rheumatoid arthritis (RA) is a highly heritable complex disease with unknown etiology. Multi-ancestry genetic research of RA promises to improve power to detect genetic signals, fine-mapping resolution and performances of polygenic risk scores (PRS). Here, we present a large-scale genome-wide association study (GWAS) of RA, which includes 276,020 samples from five ancestral groups. We conducted a multi-ancestry meta-analysis and identified 124 loci (P < 5 × 10-8), of which 34 are novel. Candidate genes at the novel loci suggest essential roles of the immune system (for example, TNIP2 and TNFRSF11A) and joint tissues (for example, WISP1) in RA etiology. Multi-ancestry fine-mapping identified putatively causal variants with biological insights (for example, LEF1). Moreover, PRS based on multi-ancestry GWAS outperformed PRS based on single-ancestry GWAS and had comparable performance between populations of European and East Asian ancestries. Our study provides several insights into the etiology of RA and improves the genetic predictability of RA.

Official Positions for FRAX® Bone Mineral Density and FRAX® simplification from Joint Official Positions Development Conference of the International Society for Clinical Densitometry and International Osteoporosis Foundation on FRAX®.

Tools to predict fracture risk are useful for selecting patients for pharmacological therapy in order to reduce fracture risk and redirect limited healthcare resources to those who are most likely to benefit. FRAX® is a World Health Organization fracture risk assessment algorithm for estimating the 10-year probability of hip fracture and major osteoporotic fracture. Effective application of FRAX® in clinical practice requires a thorough understanding of its limitations as well as its utility. For some patients, FRAX® may underestimate or overestimate fracture risk. In order to address some of the common issues encountered with the use of FRAX® for individual patients, the International Society for Clinical Densitometry (ISCD) and International Osteoporosis Foundation (IOF) assigned task forces to review the medical evidence and make recommendations for optimal use of FRAX® in clinical practice. Among the issues addressed were the use of bone mineral density (BMD) measurements at skeletal sites other than the femoral neck, the use of technologies other than dual-energy X-ray absorptiometry, the use of FRAX® without BMD input, the use of FRAX® to monitor treatment, and the addition of the rate of bone loss as a clinical risk factor for FRAX®. The evidence and recommendations were presented to a panel of experts at the Joint ISCD-IOF FRAX® Position Development Conference, resulting in the development of Joint ISCD-IOF Official Positions addressing FRAX®-related issues.

Development of an Educational Video for Self-Assessment of Patients with RA: Steps, Challenges, and Responses.

OBJECTIVES: The primary objective was to develop an educational video to teach patients with rheumatoid arthritis (RA) self-assessment of their disease activity. Secondary objectives were to validate the video, identify the challenges in producing it, and the responses to these challenges. METHODS: Rheumatologists from 7 Middle Eastern Arab countries (MEAC) discussed unmet needs in the education of patients with RA. They reviewed pre-existing educational audiovisual material and drafted the script for a new video in Arabic. The video was produced in collaboration with a technical team, then validated by patients using a standardized interview. At each step of production, challenges were identified. RESULTS: Twenty-three rheumatologists from MEAC identified unmet needs in patients' education. A video was produced, explaining the concepts of treat-to-target and showing a patient performing self-assessment using DAS-28. Sixty-two patients were interviewed for validation and found the video to be useful and easy to understand, albeit not replacing the physician's visit. Most common challenges encountered included acceptance of patient empowerment, agreement on DAS-28 as composite measure, production of a comprehensible written Arabic text, and addressing the population cultural mix. CONCLUSION: Despite challenges, the video was well accepted among patients and can be used for clinical and research purposes. It is particularly useful in pandemic periods where social distancing is recommended.

The impact of COVID-19 pandemic on rheumatology practice: a cross-sectional multinational study.

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.

Impact of the COVID-19 pandemic on patients with chronic rheumatic diseases: A study in 15 Arab countries.

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.

Dimensionality reduction reveals fine-scale structure in the Japanese population with consequences for polygenic risk prediction.

The diversity in our genome is crucial to understanding the demographic history of worldwide populations. However, we have yet to know whether subtle genetic differences within a population can be disentangled, or whether they have an impact on complex traits. Here we apply dimensionality reduction methods (PCA, t-SNE, PCA-t-SNE, UMAP, and PCA-UMAP) to biobank-derived genomic data of a Japanese population (n = 169,719). Dimensionality reduction reveals fine-scale population structure, conspicuously differentiating adjacent insular subpopulations. We further enluciate the demographic landscape of these Japanese subpopulations using population genetics analyses. Finally, we perform phenome-wide polygenic risk score (PRS) analyses on 67 complex traits. Differences in PRS between the deconvoluted subpopulations are not always concordant with those in the observed phenotypes, suggesting that the PRS differences might reflect biases from the uncorrected structure, in a trait-dependent manner. This study suggests that such an uncorrected structure can be a potential pitfall in the clinical application of PRS.

Correction: Epidemiology and treatment patterns of rheumatoid arthritis in a large cohort of Arab patients.

[This corrects the article DOI: 10.1371/journal.pone.0208240.].

Epidemiology and treatment patterns of rheumatoid arthritis in a large cohort of Arab patients.

OBJECTIVES: There is limited information on the epidemiology and treatment patterns of rheumatoid arthritis (RA) across the Arab region. We aim in this study to describe the demographic characteristics, clinical profile, and treatment patterns of patients of Arab ancestry with RA. METHODS: This is a cross sectional study of 895 patients with established rheumatoid arthritis enrolled from five sites (Jordan, Lebanon, Qatar, Kingdom of Saudi Arabia (KSA), and United Arab Emirates). Demographic characteristics, clinical profile, and treatment patterns are compared between the five countries. RESULTS: The majority of our patients are women, have an average disease duration of 10 years, are married and non-smokers, with completed secondary education. We report a high (>80%) ever-use of methotrexate (MTX) and steroids among our RA population, while the ever-use of disease modifying anti-rheumatic drugs (DMARDs) and TNF-inhibitors average around 67% and 33%, respectively. There are variations in RA treatment use between the five country sites. Highest utilization of steroids is identified in Jordan and KSA (p-value < 0.001), while the highest ever-use of TNF-inhibitors is reported in KSA (p-value < 0.001). CONCLUSION: Disparities in usage of RA treatments among Arab patients are noted across the five countries. National gross domestic product (GDP), as well as some other unique features in each country likely affect these. Developing treatment guidelines specific to this region could contribute in delivering standardized therapies to RA patients.

Correction to: Recommendations for the management of rheumatoid arthritis in the Eastern Mediterranean region: an adolopment of the 2015 American College of Rheumatology guidelines.

In the original version of this article the first name of the co-author was incorrectly spelled as "Khaled A. Alnaqbi". The correct spelling should have been "Khalid A. Alnaqbi". This is now presented correctly in this article.