Pediatric rheumatology education: the virtual frontier a review.

BACKGROUND: Many children with rheumatic and musculoskeletal diseases are unrecognized. Identifying these children requires health care provider awareness, knowledge, and skills to recognize disease features and how (and when) to refer to specialist care. The aim of this paper is to highlight the need for better access to health care, review the essential role that education and virtual care play to address unmet need in low resource areas and especially to expand workforce capacity. Using collaborative partnerships, virtual platforms, and innovative assessment methods, musculoskeletal care and education can be delivered to reach a greater audience than ever before. Increased awareness through multiple initiatives and readily available resources are imperative to improve global rheumatology care. CONCLUSION: The needs of children with rheumatic diseases and musculoskeletal conditions are vastly underserved around the world resulting in preventable morbidity and mortality. Expanded implementation of virtual education and e-health care platforms provides an opportunity to increase access to care for children globally.

Novel electrical therapy to improve sleep disturbance in patients with autoimmune rheumatic diseases.

OBJECTIVES: Sleep disturbance is common in autoimmune rheumatism diseases (ARD) and it plays an important role in activating disease and affects the quality of life. This study aims to evaluate the efficacy and acceptability of the novel electrical therapy on sleep disturbance in ARD patients and its effect on immunologic factors. METHODS: A total of 51 ARD patients (26 treatment group and 25 control group) with sleep disturbance were enrolled in this study. Sleep parameters and immunological indicators (serum level of 12 cytokines and immune function) were collected. The novel electrical therapy was prescribed for 15-30 min 3-6 times a day. The Pittsburg Sleep Index (PSQI) was assessed before and after 3 months' treatment by Mi Energy equipment. Immune function and serum levels of cytokines of all participants at baseline and after treatment were tested with flow cytometry and flow immunofluorescence, respectively. Correlation analysis was used to analyze the relationship between sleep disturbance and immunologic factors. Multiple linear regression analysis was employed to investigate the risk of sleep disturbance in ARD. RESULTS: The global score of PSQI (Baseline: 12.81 ± 4.07, After novel electrical therapy: 4.88 ± 2.76) was effectively improved after 3 months of adjuvant therapy by electrical therapy. We also found that serum levels of IL-8 and IL-1ß statistically significantly decreased after novel electrical therapy. This adjuvant therapy can also significantly decrease the percentage of CD4 + CD8 + T cell, effector memory CD8 + T cell, Memory CD8 + T cell, Th17 cell, and plasma cell and significantly can increase the percentage of naïve CD8 + T cell, Th2 cell, and Tfh2 cell. Nevertheless, all serum level of 12 cytokines and the percentage of immune cells did not correlate with the PSQI global score except the Tc17 cell. Furthermore, age is an independent risk factor influencing PSQI scores (OR = 1.15, p < 0.05) in patients with autoimmune diseases through multiple linear regression analysis. CONCLUSIONS: Novel electrical therapy can effectively improve sleep disturbance in patients with ARD. It can also change the serum level of some cytokines (IL-8 and IL-1ß) and percentage of immune cells (CD4 + CD8 + T cell, effector memory CD8 + T cell, Memory CD8 + T cell, Th17 cell, naïve CD8 + T cell, Th2 cell, Tfh2 cell, and plasma cell).

Nurses' roles, interventions, and implications for management of rheumatic diseases.

Nurses have become integral members of multidisciplinary teams in managing rheumatic diseases, departing from their traditional patient care roles. This article provides a comprehensive review of nurses' roles, interventions, and impacts in several rheumatic diseases, including rheumatoid arthritis, osteoarthritis, spondyloarthritis, gout, systemic lupus erythematosus, and polymyalgia rheumatica. It has been demonstrated that care under nursing supervision is effective and safe, with benefits including disease management, quality of life, and treatment adherence. In addition, nurses play a crucial role in promoting health, educating patients, and administering biological disease-modifying anti-rheumatic drugs. The COVID-19 pandemic has highlighted the significance of telehealth services and nurses' role in delivering remote care. However, nursing education and training challenges persist, particularly in standardization and access to postgraduate education. Efforts to enhance the role of nurses in rheumatology care are necessary to optimize patient outcomes and meet the evolving needs of individuals with rheumatic diseases. Collaboration across healthcare institutions, professional groups, and educational facilities is necessary for promoting the continual growth and advancement of rheumatology nurse practice. By equipping nurses with the requisite knowledge, expertise, and resources to deliver top-notch care, we can enhance the well-being of individuals with rheumatic diseases and foster improved overall health outcomes.

Expanding the role of CAR T-cell therapy: From B-cell hematological malignancies to autoimmune rheumatic diseases.

Chimeric antigen receptor (CAR) T-cell therapy is a form of immunotherapy where the lymphocytes, mostly T-cells, are redirected to specifically recognize and eliminate a target antigen by coupling them with CARs. The binding of CAR and target cell surface antigens leads to vigorous T cell activation and robust anti-tumor immune responses. Areas of implication of CAR T-cell therapies include mainly hematological malignancies (i.e., advanced B-cell cancers); however, recent studies have proven the unprecedented success of the new immunotherapy also in autoimmune rheumatic diseases. We aim to review the recent advances in CAR T-cell therapies in rheumatology but also to address the limitations of their use in the real clinical practice based on the data on their efficacy and safety.

Listening to patients, for the patients: The COVAD Study-Vision, organizational structure, and challenges.

BACKGROUND: The pandemic presented unique challenges for individuals with autoimmune and rheumatic diseases (AIRDs) due to their underlying condition, the effects of immunosuppressive treatments, and increased vaccine hesitancy. OBJECTIVES: The COVID-19 vaccination in autoimmune diseases (COVAD) study, a series of ongoing, patient self-reported surveys were conceived with the vision of being a unique tool to gather patient perspectives on AIRDs. It involved a multinational, multicenter collaborative effort amidst a global lockdown. METHODS: Leveraging social media as a research tool, COVAD collected data using validated patient-reported outcomes (PROs). The study, comprising a core team, steering committee, and global collaborators, facilitated data collection and analysis. A pilot-tested, validated survey, featuring questions regarding COVID-19 infection, vaccination and outcomes, patient demographics, and PROs was circulated to patients with AIRDs and healthy controls (HCs). DISCUSSION: We present the challenges encountered during this international collaborative project, including coordination, data management, funding constraints, language barriers, and authorship concerns, while highlighting the measures taken to address them. CONCLUSION: Collaborative virtual models offer a dynamic new frontier in medical research and are vital to studying rare diseases. The COVAD study demonstrates the potential of online platforms for conducting large-scale, patient-focused research and underscores the importance of integrating patient perspective into clinical care. Care of patients is our central motivation, and it is essential to recognize their voices as equal stakeholders and valued partners in the study of the conditions that affect them.

Identifying key health system components associated with improved outcomes to inform the re-configuration of services for adults with rare autoimmune rheumatic diseases: a mixed-methods study.

BACKGROUND: Adults with rare autoimmune rheumatic diseases face unique challenges and struggles to navigate health-care systems designed to manage common conditions. Evidence to inform an optimal service framework for their care is scarce. Using systemic vasculitis as an exemplar, we aimed to identify and explain the key service components underpinning effective care for rare diseases. METHODS: In this mixed-methods study, data were collected as part of a survey of vasculitis service providers across the UK and Ireland, interviews with patients, and from organisational case studies to identify key service components that enable good care. The association between these components and patient outcomes (eg, serious infections, mortality) and provider outcomes (eg, emergency hospital admissions) were examined in a population-based data linkage study using routine health-care data obtained from patients with antineutrophil cytoplasmic antibody (ANCA)-associated vasculitis from national health datasets in Scotland. We did univariable and multivariable analyses using Bayesian poisson and negative binomial regression to estimate incident rate ratios (IRRs), and Cox proportional hazards models to estimate hazard ratios (HRs). People with lived experiences were involved in the research and writing process. FINDINGS: Good care was characterised by service components that supported timely access to services, integrated care, and expertise. In 1420 patients with ANCA-associated vasculitis identified from national health datasets, service-reported average waiting times for new patients of less than 1 week were associated with fewer serious infections (IRR 0·70 [95% credibility interval 0·55-0·88]) and fewer emergency hospital admissions (0·78 [0·68-0·92]). Nurse-led advice lines were associated with fewer serious infections (0·76 [0·58-0·93]) and fewer emergency hospital admissions (0·85 [0·74-0·96]). Average waiting times for new patients of less than 1 week were also associated with reduced mortality (HR 0·59 [95% credibility interval 0·37-0·93]). Cohorted clinics, nurse-led clinics, and specialist vasculitis multi-disciplinary team meetings were associated with fewer serious infections (IRR 0·75 [0·59-0·96] for cohorted clinics; 0·65 [0·39-0·84] for nurse-led clinics; 0·72 [0·57-0·90] for specialist vasculitis multi-disciplinary team meetings) and emergency hospital admissions (0·81 [0·71-0·91]; 0·75 [0·65-0·94]; 0·86 [0·75-0·96]). Key components were characterised by their ability to overcome professional tensions between specialties. INTERPRETATION: Key service components associated with important health outcomes and underpinning factors were identified to inform initiatives to improve the design, delivery, and effectiveness of health-care models for rare autoimmune rheumatic diseases. FUNDING: Versus Arthritis.

Incidence and disease burden of autoimmune inflammatory rheumatic diseases after non-pharmaceutical interventions in the COVID-19 era: A nationwide observational study in Korea.

BACKGROUND: Infections are considered risk factors for autoimmune inflammatory rheumatic diseases (AIRDs), the incidence of which is considered to have been impacted by the COVID-19 pandemic. The impact of non-pharmaceutical interventions (NPIs) on the incidence of AIRDs and their associated health care services and medical expenses in Korea was investigated. METHODS: We included all AIRD cases reported between January 2016 and February 2021 based on the National Health Insurance Service data. We evaluated changes in incidence trends for each AIRD before and after NPI implementation (Feb 2020 to Feb 2021) using segmented regression analysis. Changes in health care utilization and medical costs for each AIRD before and after NPI implementation were also investigated. RESULTS: After NPI implementation, monthly incidence rates declined significantly by 0.205 per 1 000 000 (95% confidence interval [CI], -0.308 to -0.101, p < .001) in patients with systemic lupus erythematosus (SLE). No significant changes in the incidence of all AIRDs other than SLE were observed before and after implementation. Further, annual outpatient department visits per patient were lower during implementation for all diseases, except juvenile idiopathic arthritis (JIA). The prescription days per outpatient visit increased significantly during implementation for all diseases, except JIA and ankylosing spondylitis. During implementation, the total annual medical costs per patient tended to decrease for all diseases, except JIA and mixed connective tissue disease. CONCLUSION: Implementation of NPIs to contain the pandemic led to a reduction in the incidence of SLE and changed patterns of medical care utilization and treatment cost for most AIRDs.

Pregnancy and the Autoimmune Patient.

PURPOSE OF REVIEW: This article will review the current understanding of the immunologic changes that occur during pregnancy. It will discuss the impact of pregnancy on the disease activity of autoimmune or inflammatory rheumatic diseases (AIRD). Lastly, it will highlight the most recent data on pre-conception and pregnancy management practices that can improve pregnancy outcomes in autoimmune patients. RECENT FINDINGS: Pregnancy is an immunologically complex and dynamic state that may affect the activity of AIRDs, with more patients having active disease during pregnancy than previously thought. Uncontrolled inflammatory diseases are associated with poor pregnancy outcomes such as preeclampsia, small for gestational age infants, and prematurity. Pre-conception counseling and early pregnancy planning discussions can help ensure optimal disease control and medication management prior to attempting conception. Adequate control of AIRDs on pregnancy-compatible medications during the pre-conception, pregnancy, and postpartum periods is required for optimal pregnancy outcomes.

Exploring paediatric rheumatology care: a ten-year retrospective analysis of the patient population in Ghana.

BACKGROUND: Rheumatic diseases can seriously impact children's general health, development, and growth. However, due to a lack of resources, paediatric rheumatology is a largely underdeveloped speciality in many African nations. Children with rheumatic disorders face obstacles in accessing specialized medical care, including lack of specialists, care centres, medication access, and limited research and education to increase understanding of paediatric rheumatic disease among healthcare practitioners. This study described the disease characteristics, prevalence, and challenges faced by paediatric rheumatic disease patients receiving care at a teaching hospital in Accra, Ghana. METHODS: A retrospective record-based study was conducted among all paediatric cases presenting to the rheumatology clinic of the Korle Bu Teaching Hospital (KBTH) from January 2011 to December 2021. Data collected include clinical features, laboratory findings at disease presentation, andtherapeutic regimens prescribed per standard guidelines and experiences. RESULTS: A total of 121 cases were identified as of 2021, indicating a point prevalence of 0.0011%. The majority (73%) were females with a mean age of 13.4 ± 3.2 years. The mean duration of symptoms in months experienced by patients before being successfully referred to a rheumatologist was 18 months. There were significant differences between referred and confirmed diagnoses, especially in cases involving mixed connective tissue diseases (MCTD), systemic lupus erythematosus (SLE), and juvenile dermatomyositis (JDM), suggesting that these conditions may be under-recognised. Arthralgia and arthritis were the most common presenting symptoms. More than three-quarters (86.8%) of the cases studied were treated with steroids (oral or intravenous). In cases requiring immunosuppressive therapy, methotrexate was the most commonly prescribed in 33.9% of instances. Mortality was recorded at 8.3%, with the majority involving SLE cases. Most (95.7%) of the primary caregivers expressed positive experiences regarding care received at the adult rheumatology clinic. CONCLUSION: There were significant delays in diagnosis and diagnostic accuracy for patients with paediatric rheumatic disease (PRD). This highlights the pressing need for strengthening paediatric rheumatology services in Africa, including increasing awareness about these conditions among the public and healthcare providers to improve early diagnosis and quality of life for children with these conditions.

Transition to Adult Rheumatology Care: A Disease-Specific Guide.

ABSTRACT: Young adults with childhood-onset rheumatic diseases are more frequently establishing and continuing care with adult rheumatologists. The transfer of care can be challenging for both the young adult patients and their adult rheumatologists, in large part due to differences between pediatric-onset rheumatic diseases and their adult-onset counterparts, or due to the rarity of some pediatric-onset rheumatic conditions. Other challenges are due to cultural differences between pediatric and adult medical care and to the young adult needing to increasingly perform self-management skills that were previously managed by parents or other caregivers. In this review, we will provide a summary of strategies for working effectively with young adults as they transition to adult care. We will then discuss a subset of childhood-onset rheumatic diseases-including juvenile idiopathic arthritis, localized scleroderma, autoinflammatory diseases, pediatric-onset systemic lupus erythematosus, juvenile-onset dermatomyositis, and autoimmune encephalitis-for which clinical manifestations, management, and prognosis frequently differ between pediatric onset and adult onset. Our aim is to highlight differences that make caring for this population of transitioning young adults unique, providing tools and knowledge to empower the adult rheumatologist to care for these young adults in ways that are evidence-based, effective, efficient, and rewarding.

Development and evaluation of shared decision-making tools in rheumatology: A scoping review.

INTRODUCTION: Shared decision-making (SDM) tools are facilitators of decision-making through a collaborative process between patients/caregivers and clinicians. These tools help clinicians understand patient's perspectives and help patients in making informed decisions based on their preferences. Despite their usefulness for both patients and clinicians, SDM tools are not widely implemented in everyday practice. One barrier is the lack of clarity on the development and evaluation processes of these tools. Such processes have not been previously described in the field of rheumatology. OBJECTIVE: To describe the development and evaluation processes of shared decision-making (SDM) tools used in rheumatology. METHODS: Bibliographic databases (e.g., EMBASE and CINAHL) were searched for relevant articles. Guidelines for the PRISMA extension for scoping reviews were followed. Studies included were: addressing SDM among adults in rheumatology, focusing on development and/or evaluation of SDM tool, full texts, empirical research, and in the English language. RESULTS: Of the 2030 records screened, forty-six reports addressing 36 SDM tools were included. Development basis and evaluation measures varied across the studies. The most commonly reported development basis was the International Patient Decision Aids Standards (IPDAS) criteria (19/36, 53 %). Other developmental foundations reported were: The Ottawa Decision Support Framework (ODSF) (6/36, 16 %), Informed Medical Decision Foundation elements (3/36, 8 %), edutainment principles (2/36, 5.5 %), and others (e.g. DISCERN and MARKOV Model) (9/31,29 %). The most commonly used evaluation measures were the Decisional Conflict Scale (18/46, 39 %), acceptability and knowledge (7/46, 15 %), and the preparation for decision-making scale (5/46,11 %). CONCLUSION: For better quality and wider implementation of such tools, there is a need for detailed, transparent, systematic, and consistent reporting of development methods and evaluation measures. Using established checklists for reporting development and evaluation is encouraged.

[Patient education in rheumatology]. / Éducation thérapeutique du patient en rhumatologie.

In Switzerland, patient education in rheumatology faces challenges, despite national advances following the development of the concept of self-management support by the Federal Office of Health. Yet it is a fundamental pillar of rheumatic disease management, meeting the needs of both patients and healthcare professionals. It helps to improve the overall quality of care and is recommended by the European Alliance of Associations for Rheumatology (EULAR). Training in PE needs to be strengthened, as does the evaluation of programmes, which must take account of the specific nature of rheumatic diseases. An integrated, patient-centered approach is essential to overcome these obstacles and promote PE in rheumatology.

En Suisse, l'éducation thérapeutique du patient (ETP) en rhumatologie rencontre des défis malgré des avancées nationales à la suite de l'élaboration du concept de soutien à l'autogestion par l'Office fédéral de la santé publique. C'est pourtant un pilier fondamental de la prise en charge des maladies rhumatismales répondant aux besoins à la fois des patients et des professionnels de la santé. Elle permet une amélioration globale de la qualité des soins et est recommandée par l'Alliance européenne des associations de rhumatologie (EULAR). La formation en ETP nécessite d'être renforcée, tout comme l'évaluation des programmes devant intégrer la spécificité des pathologies rhumatismales. Une approche intégrée et axée sur le patient est essentielle pour surmonter ces obstacles et promouvoir l'ETP en rhumatologie.

Is there an Association between Complementary and Alternative Medicine use and Trust in Physicians in Patients with Rheumatic Diseases?

INTRODUCTION: Generally, patients with chronic rheumatic diseases use complementary and alternative medicine (CAM) in addition to their conventional treatments to manage their health. Discussing these treatments with their physician is still rare, which might be directly related to patients' trust toward them. AIM: The primary objective of this study was to assess the association between patients' trust in their physician and the use of complementary and alternative medicine among patients with chronic inflammatory rheumatic diseases. As secondary objectives, to estimate the prevalence of CAM use, and to identify the associated factors with their use and with trust in physicians. METHODS: This is a cross-sectional study, which included patients with established chronic inflammatory rheumatic diseases, at the University Hospital Center in Tangier. The questionnaire included demographic and clinical information, use of conventional therapy, complementary and alternative therapy, as well as interpersonal trust in patient-physician relationships using the Trust in Physician Scale (TPS). A regression analysis was conducted to identify factors associated with CAM use and with trust in physicians. RESULTS: The study included 189 patients. 57.14% of patients reported using complementary medicine at least once, most patients were women (77.78%), mean age was 46.67 ± 13.25 years with an average course of the disease of 11.11 ± 9.23 years. The most frequently used CAM treatments were cupping therapy, massage and the ingestion of a mixture of plants. Mean ± SD Trust in Physician Scale was 47.64 ± 7.2. There was no significant difference between CAM users vs. non-users (48.08 ± 6.9 vs 47.04 ± 7.4; p = 0.35). In uni and multivariate analysis, a low level of education was significantly associated with the use of CAM. However, no statistically significant difference was found with trust in physicians (OR = 1.020, 95% CI (0.978-1.063), p = 0.354). CONCLUSION: CAM therapy is common in patients with chronic inflammatory rheumatic diseases. No statistically significant association was found with trust in physicians, it was rather observed with level of education.