Background: Paediatric rheumatic diseases are a leading cause of acquired disability in Southeast Asia and Asia-Pacific Countries (SE ASIA/ASIAPAC). The aims of this study were to identify and describe the challenges to the delivery of patient care and identify solutions to raise awareness about paediatric rheumatic diseases.
Methods: The anonymised online survey included 27 items about paediatric rheumatology (PR) clinical care and training programmes. The survey was piloted and then distributed via Survey-Monkey™ between March and July 2019. It was sent to existing group lists of physicians and allied health professionals (AHPs), who were involved in the care pathways and management of children with rheumatic diseases in SE ASIA/ASIAPAC.
Results: Of 340 participants from 14 countries, 261 participants had been involved in PR care. The majority of the participants were general paediatricians. The main reported barriers to providing specialised multidisciplinary service were the absence or inadequacy of the provision of specialists and AHPs in addition to financial issues. Access to medicines was variable and financial constraints cited as the major obstacle to accessing biological drugs within clinical settings. The lack of a critical mass of specialist paediatric rheumatologists was the main perceived barrier to PR training.
Conclusions: There are multiple challenges to PR services in SE ASIA/ASIAPAC countries. There is need for more specialist multidisciplinary services and greater access to medicines and biological therapies. The lack of specialist paediatric rheumatologists is the main barrier for greater access to PR training.
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http://dx.doi.org/10.1186/s12969-021-00498-1 | DOI Listing |
Clin Rheumatol
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Department of Pediatric Rheumatology, Zeynep Kamil Women and Children's Diseases Training and Research Hospital, Istanbul, Turkey.
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Department of Pediatric Rheumatology, Institut de Recerca Sant Joan de Déu, Hospital Sant Joan de Déu, Universitat de Barcelona, 08950 Barcelona, Spain.
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Department of Clinical and Biological Sciences, Section of Translational Pharmacology, University of Turin, Regione Gonzole 10, 10043 Orbassano, Italy.
Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in childhood, leading to severe disability and negatively affecting patients' health-related quality of life (HRQoL). The aim of this systematic review was to evaluate the adoption, reporting and assessment methodology of HRQoL in phase III clinical trials involving children with JIA. An electronic and manual search was conducted to identify primary and secondary publications of pharmacological trials conducted between 2012 and 2023.
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Laboratory of Clinical Immunology and Microbiology, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Bethesda, MD, USA.
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Clinical Research Center for Allergy and Rheumatology, NHO Sagamihara National Hospital, Sagamihara, Kanagawa, Japan.
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