Delivery of paediatric rheumatology care: a survey of current clinical practice in Southeast Asia and Asia-Pacific regions

Abstract

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.

Implementation and assessment of a structured curriculum for a 4-week pediatric rheumatology rotation for pediatric residents

“…Pediatric rheumatology has emerged as a subspecialty in recent years, aiming to provide healthcare services for children with rheumatic diseases. However, a shortage of pediatric rheumatologists has led to inadequate pediatric rheumatology education and patient care [ 1 , 2 ]. This has resulted in delays in diagnosis and treatment [ 3 ], potentially leading to disease-related damage and disability in patients [ 4 ].…”

Nursing and allied health workforce in Australian public rheumatology departments is inadequate: a cross-sectional observational study

“…In Canada, 100% of paediatric rheumatology centres have nurses, 80% have physiotherapists, and 60% have occupational therapists [ 18 ]. However, in Southeast Asia and the Asia–Pacific, only 15% of paediatric multidisciplinary teams have rheumatology nurses, 31% have occupational therapists, and 49% have physiotherapists [ 12 ].…”

“…However, access to other allied health professionals such as podiatrists, occupational therapists, and psychologists is more difficult. Limited access to nursing and allied health professionals also occurs in other regions including Southeast Asia, the Asia–Pacific [ 12 ], and Arab countries [ 13 ].…”

A mixed methods evaluation of the Paediatric Musculoskeletal Matters (PMM) online portfolio

“…The evaluation of the PMM Portfolio is very relevant to paediatric rheumatologists who are integral to the teaching of others [ 19 – 21 , 23 ] to raise awareness and facilitate diagnosis and referral. Paediatric rheumatologists are often the drivers and champions of paediatric MSK education at faculty and institutional level [ 19 , 20 , 23 ] and we hope that awareness of the PMM Portfolio and it’s positive evaluation will support its use by paediatric rheumatologists in their teaching. The PMM Portfolio is increasingly linked with educational activities delivered by paediatric rheumatologists such as the PReS Basic Courses around the world; PMM provides essential reading and preparation for the courses.…”

“…Paediatric rheumatologists are key to the teaching of others [ 19 – 21 ] and especially teaching clinicians to whom children may initially present; such teaching is important to raise awareness, facilitate diagnosis and referral to specialist care. Paediatric rheumatologists are often the drivers of teaching paediatric MSK medicine at faculty and institutional level [ 19 , 22 , 23 ]; our evaluation aimed to support the PMM Portfolio as a valid tool to support teaching practice.…”