Addressing disparities in rural and remote access for rheumatology practice through a transformative tele-healthcare delivery system: Experience of a large cohort of patients in eastern India.

Background We present the experience of telerheumatology consultation services carried out in an eastern state of India. Methods We did this prospective, observational study of patients with rheumatological disorders and followed through telemedicine between December 2015 and May 2019. Results During the study period, we provided teleconsultation to 3583 patients with the help of 11 201 telemedicine visits. Patients resided at a median distance of 248 (13 to 510) km from the telemedicine hub. The cumulative savings of the patients as a result of this service were ₹2.4 crore (24 million). The median travel time saved was 7 hours (30 minutes to 12 hours) per patient per visit and a median of ₹6700 was saved per visit per patient. Conclusion Sustained efforts over a long period can lead to the delivery of essential rheumatology services via telemedicine to an under-priviledged population, reduce the financial burden of the poor, and help women to access healthcare services in remote parts of low- and middle-income countries (LMICs).

Transition to Adulthood through Coaching and Empowerment in Rheumatology (TRACER): A feasibility study protocol.

The transition from pediatric to adult care for patients with chronic disease is a vulnerable period, with risks of disengagement from care and subsequent complications of inadequately managed disease. This period comes at a time when there are many other transitions occurring in the young person's life, including changes to vocation, social supports, and to their physiology. The aim of the TRACER study is to assess the feasibility of conducting a multi-center, randomized-controlled trial of a virtual Transition Coach Intervention in youth transferring from pediatric to adult rheumatology care. Patients are being recruited at their last pediatric rheumatology visit from McMaster Children's Hospital and Children's Hospital, London Health Sciences Centre in Ontario, Canada. Participants are then randomized to standard of care or to eight transition coaching sessions, covering topics around health management, future planning, and self-advocacy. The primary outcomes of the study are to demonstrate protocol feasibility, including optimal recruitment and consent rates, ≥ 90% coaching session completion, and complete data collection with ≤ 5% missing data. Baseline demographics, transition readiness, global functional assessment, disease activity, and self-efficacy will be collected to characterize the study population. Recruitment has begun and is estimated to last 19 months. This study will inform the design of a robust, multi-centered, randomized-controlled study to investigate the impact of a virtual transition coaching program in supporting the physical, mental, and social well-being of youth with rheumatic disease transitioning into adult care. Clinical trial registration: ClinicalTrials.Gov protocol ID: 14499.

Immune reconstitution in rheumatic disease patients after autologous hematopoietic stem cell transplantation.

High-dose conditioning chemotherapy followed by autologous hematopoietic stem cell transplantation (auto-HSCT) in systemic sclerosis (SSc), lupus erythematosus (SLE), juvenile idiopathic arthritis (JIA), or rheumatoid arthritis (RA) was shown to allow eradication of the abnormal autoimmune compartment and "resetting" of the immune response, all contributing to the observed clinical response. A subset of patients has less favorable clinical outcomes after transplant, as auto-reactive memory cells may escape depletion or the regulatory immune network renewal be incomplete. Conditioning permits non-specific abrogation of the autoreactive T- and B-cell responses and eliminates the autoimmune repertoire. Re-infusion of autologous hematopoietic stem cells shortens the leucopenia duration and contributes to both hematologic and immune reconstitutions. After engraftment and neutrophil recovery, the first phase of immune reconstitution is characterized by clonal expansion of residual memory lymphocytes in response to early antigen stimulation and/or lymphopenia-induced proliferation. Renewal of the immune repertoire follows through exportation of de novo generated thymic-derived naïve T cells and bone marrow-derived naïve B cells, expansion of the regulatory network, and a shift from a pro-inflammatory to a more auto-tolerant profile. We review the well-described mechanisms of immune resetting and their relative contribution to disease control according to the transplantation regimen and the underlying rheumatic diseases.

[Rheumatological care in Germany : Memorandum of the German Society for Rheumatology and Clinical Immunology 2024]. / Rheumatologische Versorgung in Deutschland : Memorandum der Deutschen Gesellschaft für Rheumatologie und Klinische Immunologie 2024.

BACKGROUND: Rheumatology in Germany is facing major challenges. The need for rheumatological care is increasing and can no longer be met in some regions for capacity reasons. Too many people with an inflammatory rheumatic disease (IRD) have to forego appropriate care or receive it too late. The 4th new edition of the memorandum of the German Society for Rheumatology and Clinical Immunology (DGRh) provides information on rheumatological care in Germany. It was produced under the leadership of the DGRh together with the Professional Association of German Rheumatologists (BDRh), the Association of Acute Rheumatology Clinics (VRA), the German Rheumatism League (DRL) and the German Rheumatism Research Center (DRFZ). METHODS: The memorandum describes the current state and development of the following areas: number of people with IRD, outpatient, inpatient and rehabilitative care structures, number of specialists in rheumatology, education and training, quality of care, health economic aspects and digital care concepts. Proposals for health policy measures to safeguard rheumatological care are presented. RESULTS: Prevalence: approximately 1.8 million adults in Germany have an IRD. The prevalence is increasing, due to changes in the demographic structure of the population, improved diagnostics, treatment and longer survival. Care structures: outpatient specialist care (ASV) for rheumatic diseases is developing as a cross-sectoral care model for hospital outpatient clinics and rheumatology practices. Hospitals have been able to be certified as rheumatology centers since 2020, which enables structural developments. Specialists in rheumatology: as of 31 December 2023, there were 1164 specialists in rheumatology working in Germany. This included 715 physicians accredited to work in practices for national health assurance patients, 39% of whom were employees. In hospitals, 39% of doctors worked part-time. At least 2 rheumatology specialists per 100,000 adults are needed, i.e. around 1400, in order to provide adequate care. This means that there is a shortage of around 700 rheumatology specialists in the outpatient sector alone. Of all working specialists, 30% are currently aged 60 years old and over. Medical training: only 10 out of 38 (26%) state universities have an independent chair in rheumatology. In addition, 11 rheumatology departments are subordinate to a nonrheumatology chair. In the rheumatology-integration into student training (RISA) III study, only 16 out of 36 faculties fulfilled the recommended minimum number of compulsory hours of student rheumatology teaching. Continuing education in rheumatology: the annual postgraduate training qualifications do not cover the demand for rheumatology specialists, which is additionally increasing due to intensified workload, reduced capacities through retirement, and part-time work. Quality of care: since the introduction of highly effective medication patients with IRD have a much better chance of achieving remission of their disease. With early initiation of targeted therapy, the lives of many patients are hardly restricted at all: however, waiting times for a first rheumatological visit often last more than 3 months. Quality target is a first consultation within the first 6 weeks after the onset of symptoms. Models for early consultation, delegation of medical services, structured patient training and digital care concepts have been positively evaluated but are not covered financially. COSTS: the total annual costs for inflammatory joint diseases alone amount to around 3 billion euros. The direct costs have significantly risen since the introduction of biologics, while the indirect costs for sick leave, disability and hospitalization have fallen. CONCLUSION: The core demands of this memorandum are a significant and sustainable increase in the number of further training positions in the outpatient and inpatient sector, the creation of chairs or at least independent departments for rheumatology at all universities and the further implementation of new and cross-sectoral forms of care. This will ensure modern needs-based rheumatological care for all patients in the future.

Vignette-based comparative analysis of ChatGPT and specialist treatment decisions for rheumatic patients: results of the Rheum2Guide study.

BACKGROUND: The complex nature of rheumatic diseases poses considerable challenges for clinicians when developing individualized treatment plans. Large language models (LLMs) such as ChatGPT could enable treatment decision support. OBJECTIVE: To compare treatment plans generated by ChatGPT-3.5 and GPT-4 to those of a clinical rheumatology board (RB). DESIGN/METHODS: Fictional patient vignettes were created and GPT-3.5, GPT-4, and the RB were queried to provide respective first- and second-line treatment plans with underlying justifications. Four rheumatologists from different centers, blinded to the origin of treatment plans, selected the overall preferred treatment concept and assessed treatment plans' safety, EULAR guideline adherence, medical adequacy, overall quality, justification of the treatment plans and their completeness as well as patient vignette difficulty using a 5-point Likert scale. RESULTS: 20 fictional vignettes covering various rheumatic diseases and varying difficulty levels were assembled and a total of 160 ratings were assessed. In 68.8% (110/160) of cases, raters preferred the RB's treatment plans over those generated by GPT-4 (16.3%; 26/160) and GPT-3.5 (15.0%; 24/160). GPT-4's plans were chosen more frequently for first-line treatments compared to GPT-3.5. No significant safety differences were observed between RB and GPT-4's first-line treatment plans. Rheumatologists' plans received significantly higher ratings in guideline adherence, medical appropriateness, completeness and overall quality. Ratings did not correlate with the vignette difficulty. LLM-generated plans were notably longer and more detailed. CONCLUSION: GPT-4 and GPT-3.5 generated safe, high-quality treatment plans for rheumatic diseases, demonstrating promise in clinical decision support. Future research should investigate detailed standardized prompts and the impact of LLM usage on clinical decisions.

Bridging the gap: facilitating the use of rheumatology research results in clinical practice with hybrid implementation effectiveness studies.

The implementation of proven effective pharmacological and non-pharmacological interventions into routine rheumatology practice is a lengthy and complex process. Bridging this gap between research and practice is crucial. Hybrid implementation effectiveness studies, integrating effectiveness and implementation aspects, emerge as a proactive and innovative solution to shorten the process of translation of proven interventions into clinical practice. This viewpoint provides an overview of the various types of hybrid implementation effectiveness studies including examples from rheumatology research practice, explains their pivotal role in speeding up the implementation of rheumatology research results and concludes with practical recommendations for the conduct of hybrid implementation effectiveness studies.

Emergencies in inflammatory rheumatic diseases.

Inflammatory rheumatic diseases (IRDs), encompassing a broad spectrum of chronic disorders, typically necessitate prolonged therapeutic intervention. Nevertheless, these diseases can sometimes manifest as severe emergencies requiring prompt and extensive medical intervention. Urgent intervention is essential for effectively recognizing and managing these situations, as they have the potential to be life-threatening and can result in severe morbidity and mortality. Emergencies in IRDs can occur with different frequencies and manifestations, including nervous system issues, severe infections, thrombosis-emboli, renal crises, gastrointestinal issues, and cardiovascular events. The fact that these events can occur across different IRDs underscores the necessity for heightened awareness and readiness among healthcare professionals. The pathophysiologic mechanisms that cause rheumatic emergencies are complex and involve multiple factors. These emergencies frequently arise due to the interplay between the inflammatory characteristics of rheumatic diseases and different systemic triggers. Early detection and treatment can have a substantial impact on an individual's prognosis in cases of severe and life-threatening disorders that require prompt recognition. Rapid decision-making and urgent care are required to effectively address rheumatic emergencies, as well as the implementation of a diagnostic flowchart. This article provides an overview of the emergencies linked to IRDs, classifying and assessing them individually. This article aims to enhance healthcare professionals' knowledge and awareness of critical situations by examining current recommendations and pathophysiological information. Implementing standardized diagnostic and treatment methods, providing patient education, and conducting continuing research into the underlying mechanisms are essential for enhancing the management of these critical situations and improving patient outcomes.

Bridging distances and saving costs: insights from a pilot project of telerheumatology in a rural area of Pakistan.

Enhancing access to healthcare remains a formidable challenge in rural regions of low- and lower-middle-income countries. Amid evolving healthcare challenges, telerheumatology provides opportunities to bridge gaps and expand access to rheumatology care, particularly in remote areas. We describe a pilot telerheumatology program and its cost-, time-, and travel-saving potential in a remote rural setting in northern Pakistan. The telerheumatology program commenced at the Pakistan Institute of Medical Sciences Islamabad, providing services through video consultations to a basic health unit in the Gilgit-Baltistan region. Patients visiting from the Gilgit-Baltistan region willing to participate were recruited in the program. Demographics and logistical metrics were recorded in a dedicated registry. A total of 533 consultations were carried out from April 2022 to April 2023. The majority of the patients were female (318/533, 59.7%). The median age of patients was 50 ± 15.7 years. The average wait time for consultation was 20 ± 13 min. The average travel time to reach telecentre was 59 ± 53 min. The average travel cost to reach telecentre was 379 ± 780 PKR (1.85 ± 3.81 USD). The average duration of consultation was 15 ± 5 min. The most common diagnosis for consultation was knee osteoarthritis (237, 44.5%), chronic low back pain (118, 22.1%), and rheumatoid arthritis (42, 7.9%). On average, patients saved 787 ± 29 km of distance, 15 ± 1 h of traveling, and 6702 ± 535 PKR (33 ± 3 USD) that would have been required to travel to our tertiary care hospital. Telerheumatology substantially reduced travel time, distance, and cost for patients. It has the potential to deliver outpatient rheumatology consultation in an economically efficient manner, effectively breaking geographical barriers and expanding access to essential services for patients in remote areas.

Assessing Patient Values and Preferences to Inform the 2023 American College of Rheumatology/American College of Chest Physicians Interstitial Lung Disease Guidelines.

OBJECTIVE: Patient engagement is critical to clinical practice guideline (CPG) development. This work presents our approach to ascertaining patients' values and preferences to inform the American College of Rheumatology guidelines for screening, monitoring, and treatment of interstitial lung disease (ILD) in people with systemic autoimmune rheumatic diseases (SARDs). METHODS: We conducted a cross-sectional qualitative study of a purposefully sampled Patient Panel using a modified content analytic approach. The study team reviewed text transcripts from the Patient Panel discussion to identify themes and develop a clustered thematic schema. RESULTS: Twenty-one patients (75% women) participated, with a mean age of 53 years (range 33-73). Patients had one or more SARDs: systemic sclerosis (38%), Sjögren disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). We identified 10 themes in 4 thematic clusters: communication, screening and monitoring, treatment goals, and treatment adverse effects. Patients prioritized recognizing ILD symptoms, importance of ILD screening and close monitoring, goals of survival and improving quality of life, and willingness to accept treatment risks provided that there is close communication with providers. Patient representatives shared patients' priorities and insight at the Voting Panel meeting, influencing multiple guideline recommendations. CONCLUSION: Patient engagement fosters a holistic approach to CPG development, leading to recommendations aiming for the best clinical outcomes while prioritizing outcomes important for patients. The patient-identified themes played a critical role in ILD guideline development and provide core elements for shared decision-making as clinicians make management and therapeutic decisions with patients with SARD-associated ILD.

Evidence for telemedicine heterogeneity in rheumatic and musculoskeletal diseases care: a scoping review.

Telemedicine and digital health represent alternative approaches for clinical practice; indeed, its potential in healthcare services for prevention, diagnosis, treatment, rehabilitation, and disease monitoring is widely acknowledged. These are all crucial issues to consider when dealing with chronic Rheumatic and Musculoskeletal Diseases (RMDs). The aim was to determine the current state of telemedicine in the field of rheumatology, considering the tools and devices in use as well as the Patient Reported Outcomes. A scoping review was performed following the PRISMA-ScR, retrieving articles through five databases from 1990 to 2022. Inclusion criteria were as follows: (I) adult patients with RMDs, (II) original research papers in the English language with available abstracts, and (III) telehealth and telemedicine are provided as healthcare services. Within the 62 included studies, multiple tools of telemedicine were used: 21/62 websites/online platforms, 18/62 mobile applications, 16/62 telephone contacts, 5/62 video-consultations, and 1/62 wearable devices. Outcomes were classified based on the economic, clinical, and humanistic framework. Clinical outcomes assessed through digital tools were pain, disease activity, and serum uric acid levels. Humanistic outcomes have been grouped according to four categories (e.g., mental and physical function, health management, and health perception). The heterogeneity of digital tools in the field of rheumatology highlights the challenge of implementing reliable research into clinical practice. Effective telerehabilitation models have been presented, and the use of a tight control strategy has also been mentioned. Future research should focus on establishing studies on other RMDs as well as summarizing and formulating clinical guidelines for RMDs. Key Points • Evidence for the usefulness of telemedicine and digital health for managing and monitoring rheumatic and musculoskeletal diseases is progressively increasing. • Several digital tools effectively measure clinical and humanistic and patient reported outcomes in rheumatic and musculoskeletal diseases. • Integrating diverse digital tools in rheumatology is challenging yet promising. • Future research should focus on developing standardized recommendations for practical use of telemedicine in daily practice.

Tailoring the treatment of inflammatory rheumatic diseases by a better stratification and characterization of the clinical patient heterogeneity. Findings from a systematic literature review and experts' consensus.

Inflammatory rheumatic diseases are different pathologic conditions associated with a deregulated immune response, codified along a spectrum of disorders, with autoinflammatory and autoimmune diseases as two-end phenotypes of this continuum. Despite pathogenic differences, inflammatory rheumatic diseases are commonly managed with a limited number of immunosuppressive drugs, sometimes with partial evidence or transferring physicians' knowledge in different patients. In addition, several randomized clinical trials, enrolling these patients, did not meet the primary pre-established outcomes and these findings could be linked to the underlying molecular diversities along the spectrum of inflammatory rheumatic disorders. In fact, the resulting patient heterogeneity may be driven by differences in underlying molecular pathology also resulting in variable responses to immunosuppressive drugs. Thus, the identification of different clinical subsets may possibly overcome the major obstacles that limit the development more effective therapeutic strategies for these patients with inflammatory rheumatic diseases. This clinical heterogeneity could require a diverse therapeutic management to improve patient outcomes and increase the frequency of clinical remission. Therefore, the importance of better patient stratification and characterization is increasingly pointed out according to the precision medicine principles, also suggesting a new approach for disease treatment. In fact, based on a better proposed patient profiling, clinicians could more appropriately balance the therapeutic management. On these bases, we synthetized and discussed the available literature about the patient profiling in regard to therapy in the context of inflammatory rheumatic diseases, mainly focusing on randomized clinical trials. We provided an overview of the importance of a better stratification and characterization of the clinical heterogeneity of patients with inflammatory rheumatic diseases identifying this point as crucial in improving the management of these patients.

Interventional Radiology for Rheumatic Diseases.

Imaging plays a key role in the management of rheumatological pathologies, also as guidance for diagnostic and therapeutic interventional procedures, as it can provide better accuracy and safety compared to palpation-guided interventions. Inflammatory and degenerative conditions nonresponsive to systemic treatment may benefit from intra-articular and periarticular administration of drugs, with therapeutic and symptomatic actions or providing a bridge for surgery. Desired effects include reduction of inflammation and pain and improvement of physical function of patients. Training and knowledge of indications, appropriate procedures, contraindications, and side effects are necessary to obtain maximum accuracy and safety in performing interventional procedures.

Imaging Response to Treatment in Rheumatology.

This article highlights the crucial role of various imaging techniques in the diagnosis and monitoring of rheumatologic diseases. It provides an overview of the different modalities available for imaging rheumatic diseases, the disease processes they are able to demonstrate, and their utility in the monitoring response to therapy. It emphasizes the need for a multifaceted approach that combines radiography, ultrasound, MR imaging, and PET imaging to gain a comprehensive understanding of disease progression and treatment response. Standardized grading systems along with quantitative imaging techniques are playing an increasing role in monitoring disease activity and assessing response to therapy.