Division of Rheumatology, Department of Paediatrics, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand.
Paediatric Rheumatology Unit, Selayang Hospital, Selangor, Malaysia.
Pediatr Rheumatol Online J. 2021 Jan 23;19(1):11. doi: 10.1186/s12969-021-00498-1.
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.
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.
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.
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.
儿科风湿病是东南亚和亚太国家(SEA/ASIA-PAC)获得性残疾的主要原因。本研究的目的是确定和描述提供患者护理方面的挑战,并确定提高对儿科风湿病认识的解决方案。
匿名在线调查包括 27 个关于儿科风湿病(PR)临床护理和培训计划的项目。该调查经过试点,然后于 2019 年 3 月至 7 月通过 Survey-Monkey 进行了分发。它被发送给参与 SEA/ASIA-PAC 地区儿童风湿病护理途径和管理的医生和相关健康专业人员(AHPs)的现有团体名单。
在来自 14 个国家的 340 名参与者中,有 261 名参与者参与了 PR 护理。大多数参与者是普通儿科医生。提供专门的多学科服务的主要障碍是缺乏专家和 AHPs 的提供,或者是提供的专家和 AHPs 不足,再加上财政问题。药物的可及性各不相同,在临床环境中获得生物药物的主要障碍是经济拮据。缺乏足够数量的专科儿科风湿病专家是 PR 培训的主要障碍。
SEA/ASIA-PAC 国家的 PR 服务存在多种挑战。需要更多的专科多学科服务,以及更多的药物和生物治疗方法。缺乏专科儿科风湿病专家是更多地获得 PR 培训的主要障碍。