International League of Associations for Rheumatology

Projects.

Arthrocentesis Workshop in Jamaica ILARThe International League of Associations for Rheumatology’s mission is to advance rheumatology in developing countries. The ILAR Executive Committee consists of the Presidents and Presidents-Elect of ACR, EULAR, PANLAR, APLAR and AFLAR. The collaboration of the leaders of these international organizations has resulted in a renewed commitment to provide grants to support programs that lead to progress in the practice and education of rheumatology in countries where there is an exceptional need.

The ILAR Grants Program, a funding initiative, was developed in response to the growing need for global advancements in rheumatology. Since the program’s inception, ILAR has awarded more than $550,000 to 27 projects around the world. See projects from previous years >

The International League of Associations for Rheumatology would like to thank AbbVie for their generous support of ILAR 2016.

 

2016 ILAR Project Recipients

 

Location: Latin America and Caribbean countries (LAC)

Project Manager: Loreto Massardo, MD and Lilith Strange, MD

Rheumatoid arthritis (RA) affects 0.8% of the population in LAC with only a few qualified attending rheumatologists. Up to date health education is a fundamental tool in the management of patients suffering from RA. However a review of the existing patient education material, particularly web-based, reveals that the offer is very limited in LAC (1). Moreover contents, methods and visual material is not well designed for the target population’s specific needs. Also, it is not easily accessible and no appropriate unbiased audio-visual material is used. As morbidity and damage can occur from the disease and its treatment, health education is a significant unmet need for patients with RA in LAC, therefore practical solutions must be offered to a wide range of patients throughout this large region.  We have identified major topics that need to be covered (1).

To address these needs this project will create “RA patient educational material” appropriately designed for the use and benefit of RA patients and their families across LAC.

This material is intended to be utilized on a PANLAR website in simple terms in local languages (Spanish, Portuguese and widely spoken indigenous languages: Quechua, Wayuu, Guarani, Aymara, Mapudungun, Nahuatl).

Location: Liberia

Project Manager: Mosoka Fallah, MD

Between 1994 and the present, there have been several Ebola virus outbreaks affecting mostly countries in central Africa. However, the 2014 West African outbreak significantly exceeds all previous outbreaks in geographic range and number of individuals affected. Ebola virus disease (EVD) is highly lethal with case fatality rates of 70-80% in the current West African outbreak. While the clinical manifestations of acute Ebola virus infection are well documented, little is known about long-term clinical sequelae, in survivors convalescing from EVD.  Clinical reports from the current Ebola epidemic in West Africa indicate up to half of EVD survivors have persistent rheumatologic symptoms such as myalgias, joint pain and swelling. Thus, chronic arthritis and myositis may be long-term clinical sequale of EVD.  There are approximately 1500 survivors from Ebola Virus Disease (EVD) in Liberia. The Liberian-US Joint Partnership in Clinical Research is currently enrolling survivors, their close contacts, and other controls in the PREVAIL III EVD natural history study at 2 sites in Liberia, with plans to open additional sites in the near future. Study participants undergo a history, physical exam, and basic laboratory studies. As this is a natural history study, all follow-up and treatment of any identified medical conditions or complaints is done via referral to available service providers in the area. JFK Hospital in Monrovia is Liberia’s largest referral hospital and the receiving referral site for most of the EVD survivors. Thus far, approximately half of the over 500 EVD survivors enrolled in the study report rheumatologic symptoms (such as myalgias, joint pain, joint swelling). There are currently, no rheumatology specialists in the country to further evaluate and treat EVD survivors with rheumatologic symptoms. Thus, there is great need to advance the education and clinical practice of Rheumatology at JFK hospital and affiliated clinics in Liberia. NIAID funds and coordinates rotations of U.S. medical specialists to the region to train and mentor Liberian health care professionals who receive referred participants from the study. However, NIAID funds are not available to provide supplies, medications and equipment unrelated to the research conducted.

This project will allow the creation of a small stocked rheumatology clinic at JFK hospital, which will greatly enhance the ability to improve the standard of care provided to this population of individuals who appear to be at high risk for rheumatologic diseases. ILAR financial support will go to supplies for diagnostic procedures such as joint taps, medications, and patient teaching materials, which will be invaluable to this effort.

Location: South Africa and other Developing Countries

Project Manager:  Chris Scott, MD and Ricardo Russo, MD

Juvenile Idiopathic Arthritis (JIA) is the most prevalent rheumatic disease in children and a major cause of musculoskeletal disability. Developing nations face a unique set of challenges which significantly affect the ability to deliver high-quality care to patients with JIA and their families. These challenges include lack of trained pediatric rheumatologists or paediatricians, poor funding for healthcare, restricted access to medications, a high burden of infectious diseases and poverty. While treatment guidelines for JIA have been developed in several countries, these are probably applicable to only a small portion of the world’s children with JIA. Existing guidelines include the American College of Rheumatology (ACR) treatment guidelines, the British Society for Pediatric and Adolescent Rheumatology (BSPAR) Sttandards of Care and EU SHARE (Single Hub Access to RhEumatology) guidelines currently in preparation. The distances that pateints have to travel to access pediatric rheumatology healthcare, delayed diagnosis, endemic infections such as tuberculosis, malaria and HIV, poor monitoring facilities and the massive  cost of biologicals make it difficult to implement other guidelines in resource challenged settings, and there are no treatment guidelines appropriate for patients in developing nations and healthcare environments. There is thus a clear need for the development of standards of care guidelines for the developing world that address the unique challenges faced by children with JIA in developing parts of the world. This project aims to develop appropriate recommendations for the care of Juvenile Idiopathic Arthritis (and its 6 subtypes) in developing countries, with a special focus on issues relevant to these patients. It is hoped that these recommendations will provide a framework to inform the clinical services and delivery of clinical are and be a benchmark for strategy and implementation for improvement in the care of children with JIA.

Location: Ethiopia

Project Manager: Carol Hitchon, MD, MSc

Early diagnosis and institution of DMARDs are fundamental to optimal outcomes in Rheumatoid
Arthritis (RA). Most RA management guidelines recommend early use of methotrexate (MTX) at optimal doses, combination DMARDs with MTX and close follow-up to monitor efficacy and toxicity; schedules for investigations are often outlined [1-5]. Most guidelines are exceedingly difficult to apply in resource-poor areas such as Ethiopia due to local realities of health care delivery.

The World Health Organization 2011 guidelines for managing common illness in countries with limited resources[6] address polyarthritis including differential diagnoses to consider and investigations. However treatment guidelines are limited to pain control, lifestyle modification, physical therapy, and referral to a “specialist” for institution of DMARD therapy. This is problematic as there are few rheumatologists in subSaharan Africa and no practicing rheumatologist in Ethiopia; rheumatology care is primarily given by Internal Medicine physicians. The true clinical burden of rheumatic disease in Ethiopia is unknown but likely substantial. In a single day, the rheumatology clinic in Tikur Anbessa Hospital (TAH), the primary academic hospital in Addis Ababa, Ethiopia, assessed 88 patients; 55(64%) with RA (communication Dr. Mengistu).

Three of the project investigators (CH, IC, MM) recently conducted a workshop on rheumatic diseases at TAH during which we surveyed participating residents and physicians regarding their use of MTX for rheumatic diseases (Appendix). Of the 45 respondents, the majority (78%) had prescribed MTX however most used significantly lower doses than recommended (median (range) average dose 7.5mg/week (2.5-15mg/week); maximal dose 12.5mg/week (7.5-20mg/week)). The main reasons for limiting MTX use were toxicity concerns, lack/cost of diagnostic/monitoring tests, clinic overload and lack of experience. Knowledge gaps regarding contraindications for methotrexate use and drug monitoring were identified. Additional barriers included inconsistent drug supply and cost.

This project will address an urgent need to provide clinicians with guidelines for using methotrexate in rheumatic diseases that are aligned with the local realities of practicing medicine in Ethiopia. Such guidelines will be relevant to other African countries with similar challenges. In collaboration with Ethiopian providers (physicians, nurses, laboratory specialists, pharmacists), international experts (MW, CF, MM, RS, IC, CH) and patients, this project aims to develop/adapt guidelines for using MTX in rheumatic diseases.

Location: South America, Central America, Africa

Project Manager: Vinod Chandran

This project aims to address an ILAR prioritized area to adapt current treatment recommendations for PsA for areas where only limited resources are available.  The updated EULAR, as well as GRAPPA, treatment recommendations have just been finalized and will soon be published.  They include literature published to the end of 2014.  This is the ideal time to develop modifications to these very new recommendations to address the needs of resource-poor settings.

The project will produce adapted treatment recommendations covering the Americas and Africa and will work in parallel with APLAR as they develop local recommendations for the management of PsA for the Asia-Pacific region.  The project aims to produce two specific publications for the treatment recommendations in the PANLAR and AFLAR regions respectively.  These will be made accessible using journal open access to ensure that physicians will have easy access to the recommendations.  We also aim to develop a slide toolkit in relevant languages that can be used in different countries within the PANLAR/AFLAR regions.  This will allow dissemination of knowledge by the physicians involved in this initiative and they will be made available to other educational sessions to advance knowledge in this area.

Location: Latin America

Project Manager: Jonathan S. Hausmann, MD

Although rheumatic and musculoskeletal diseases represent the second-most common cause of disability worldwide, most physicians are poorly trained to identify and treat these illnesses. (1) The problem is especially acute in Latin America: a survey of 320 rheumatologists and data from 22 rheumatology societies revealed that only 29% of Latin American medical schools have a rheumatology course.(2) Most of these courses do not follow a standard curriculum, are not taught by rheumatologists, and do not take advantage of modern learning theories to improve understanding and retention of the material. In some schools, the number of credits assigned to the rheumatology course represents no more than 1% of the total program.(3) As a result, graduating physicians have poor knowledge of rheumatology and are unable to evaluate or care for patients with rheumatic diseases.(2,3) Compounding this problem is the shortage of rheumatologists in these countries, averaging 11.5 rheumatologists per million people.(1,2) To address these needs, PANLAR is developing a Task Force to improve undergraduate medical education in rheumatology.(2) This project represents an effort to address these needs as part of this Task Force. The project will address the problem with two aims:

1. To create and distribute a standard curriculum for undergraduate rheumatology education in Latin America
2. To generate an innovative online course that can be used to deliver this curriculum

 

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