109 - VARIATION IN THE PROVISION OF KD CARE IN NORTH AMERICAN CENTERS INCLUDING CHANGES SINCE THE COVID-19 PANDEMIC: THE CHILDHOOD ARTHRITIS AND RHEUMATOLOGY RESEARCH ALLIANCE (CARRA) SURVEY

Background:  The best treatment for KD patients who fail to respond to the first dose of IVIG (refractory KD) is currently unknown.  Comparative effectiveness research is a potential method to evaluate different treatment options for this subgroup of patients. To inform the development of consensus treatment plans (CTPs) for IVIG-refractory KD, the CARRA KD workgroup developed a survey to assess variation in practice related to KD care in CARRA centers in North America (NA) and to determine if the COVID-19 pandemic has led to changes in KD treatment. 
METHODS: In March 2022, the CARRA KD Workgroup sent a 34-item web-based survey randomly to 102 CARRA members in the USA and Canada. This anonymous survey addressed practice variation, including which physicians provide KD care, ECHO availability, use of standardized protocols, and changes in KD treatment practice since the onset of the COVID-19 pandemic, as well as timing of the initiation of refractory KD treatment, and medication choices.


Results:  Survey response rate was 82%, with 72 pediatric rheumatologists completing the survey section on practice variation (Figure 1). Differences were observed in care patterns, involvement of rheumatologists, and clinical experience. Hospitalists (83%) provided most of the primary KD care, with specialists providing consultant care including rheumatology (86%), cardiology (85%), and infectious disease (73%). All respondents reported access to ECHO, however, 13% did not have access prior to the initial treatment. Most (63%) reported no institution-specific protocol for refractory KD, while 28% had treatment protocols and 9% were uncertain. Just over half of respondents (55.2%) reported no practice changes following COVID-19, however, almost one third (29.9%) acknowledged a change in practice. The most significant change was an increase in the use of steroids after the first IVIG failure, reported by 80%, and increased steroid use as initial treatment of KD along with IVIG (65%).  There was also increased Anakinra use in those reporting a change in practice since the pandemic.
CONCLUSION: Our survey suggests that in NA, KD is diagnosed and managed primarily by Pediatric Hospitalists while Rheumatology, ID, and Cardiology teams are consultants. Most centers do not follow an institution-specific treatment protocol for refractory KD. ECHO prior to the first dose of IVIG is not universally available. Since the COVID-19 pandemic, steroid and anakinra use for refractory KD have increased. These variations in KD care and treatment practices will need to be considered as CTPs for IVIG-refractory KD are developed.