DEVELOPMENT OF CONTEMPORARY PATIENT-CENTRED STANDARDS OF CARE FOR CHILDREN AND YOUNG PEOPLE WITH JUVENILE IDIOPATHIC ARTHRITIS IN AUSTRALIA: A 2023 UPDATE BY THE AUSTRALIAN PAEDIATRIC RHEUMATOLOGY GROUP

Abstract

Aim: To describe the process of updating the APRG JIA SoC. Methods: The need for updated SoC was identified following the 2022 Federal Parliamentary Inquiry into Childhood Rheumatic Disease. Patients and families were invited to provide feedback on the existing 2014 (1) standards and their priorities for updated SoC. Workshops were facilitated by Arthritis Australia. Key consumer priorities included equity of access to JIA care, emotional wellbeing/support, support for school/ vocational environment. An international expert in rheumatology quality improvement was engaged to provide guidance and leadership. A literature search identified existing international SoC for JIA & other chronic illnesses. A working party was formed of 27 healthcare professionals from medical, nursing and allied health backgrounds. Development of a draft SoC document with key domains, each with nested quality statements and measures occurred over a four-day face-to-face meeting in February 2023. Thirty-three multi-disciplinary attendees from public and private sectors, including an adult rheumatologist and general paediatrician participated. Results: Key priorities identified were equity of access to care, familycentred care, excellence of care provision. Using consensus decisionmaking and iterative voting processes, 6 key domains were finalised: early care, ongoing management, emotional wellbeing, workforce, priority populations and care excellence. Meeting attendees, in small writing groups, developed 42 draft care statements. Next stages include final editing & SoC preparation, confirmation of associated quality measures, endorsement process by full APRG membership, consumer groups and professional organisations; then publication of the APRG JIA SoC. The JIA SoC and quality measures will be linked to a nation-wide benchmarking process in the future. Conclusion: The APRG have undertaken a cross-disciplinary, consumerfocused update of the 2014 Australian JIA SoC, in collaboration with key consumer and professional organisations. 1. Munro J. et al. Australian Paediatric Rheumatology Group standards of care for the management of juvenile idiopathic arthritis. J Paediatr Child Health. 2014 Sep;50(9):663-6.