Abstract
BackgroundPaediatric 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.MethodsThe 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.ResultsOf 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.ConclusionsThere 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.
Highlights
Paediatric rheumatic diseases are a leading cause of acquired disability in Southeast Asia and AsiaPacific Countries (SE ASIA/ASIAPAC)
The Juvenile Arthritis Management in less resourced countries (JAMLess) recommendations were the first to be aimed at low resource income countries (LRIC) [19] and highlighted principles to support and develop paediatric rheumatology (PR) including the need to contextually relevant guidance for clinical management, treatments, referrals, monitoring, education and training, advocacy, networks, policy and research
The online survey was piloted and distributed to clinicians (doctors, nurses, allied health professionals (AHPs)) in the SE ASIA/ASIAPAC regions; recipients were known to be involved in PR clinical care or through general paediatric networks known to have potential to be exposed to children with rheumatic diseases
Summary
Paediatric rheumatic diseases are a leading cause of acquired disability in Southeast Asia and AsiaPacific Countries (SE ASIA/ASIAPAC). Several recommendations for standards of care as well as treatment for children with rheumatic diseases have been developed by international paediatric rheumatology associations consisting of experts mainly from high resource income countries (HRIC) [10,11,12,13,14,15,16,17,18] These guidelines are not always transferable to clinical practice in middle resource income countries (MRIC) and low resource income countries (LRIC) where there are limited resources and other health care challenges as priorities for health services [19]. The JAMLess was originally intended for developing recommendations in less resourced countries and focused on JIA, many of the questions were generic to service delivery in PR [19]
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