Abstract

BackgroundWe describe a Childhood Arthritis and Rheumatology Research Alliance (CARRA) survey of North American pediatric rheumatologists that assesses physician attitudes on withdrawal of medications in systemic juvenile idiopathic arthritis (SJIA).MethodsA REDCap anonymous electronic survey was distributed to 100 random CARRA JIA workgroup physician-voting members. The survey had three broad sections including: A) demographic information; B) physicians’ opinions on clinical inactive disease (CID) in SJIA and C) existing practices for withdrawing medications in SJIA.ResultsThe survey had an 86% response rate. 88 and 93% of participants agreed with the current criteria for CID and clinical remission on medications (CRM) respectively. 78% thought it necessary to meet CRM before tapering medications except steroids. 76% use CARRA SJIA consensus treatment plans always or the majority of the time. All participants weaned steroids first in SJIA patients on combination therapy, 47% waited > 6 months before tapering additional medications. 35% each tapered methotrexate over > 6 months and 2–6 months; however, 39% preferred tapering anakinra, canakinumab and tocilizumab more quickly over 2–6 months and favored spacing the dosing interval for canakinumab and tocilizumab. When patients are on combination therapy with methotrexate and biologics, 58% preferred tapering methotrexate first while others considered patient/family preference and adverse effects to guide their choice.ConclusionMost CARRA members surveyed use published consensus treatment plans for SJIA and agree with validated definitions of CID and CRM. There was agreement with tapering steroids first in SJIA. There was considerable variability with tapering decisions of all other medications.

Highlights

  • We describe a Childhood Arthritis and Rheumatology Research Alliance (CARRA) survey of North American pediatric rheumatologists that assesses physician attitudes on withdrawal of medications in systemic juvenile idiopathic arthritis (SJIA)

  • This paper describes a CARRA survey conducted by the SJIA workgroup, to study current physician practices across North America, regarding the definition of inactive disease in SJIA, and withdrawal patterns of medications in SJIA once inactive disease is reached

  • Stated reasons for dissent included adding ferritin to the definition, removing rash and uveitis, extending duration of morning stiffness, changing duration required for Clinical inactive disease (CID), imprecision of physician global score and lack of patient/parent-reported outcomes

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Summary

Introduction

We describe a Childhood Arthritis and Rheumatology Research Alliance (CARRA) survey of North American pediatric rheumatologists that assesses physician attitudes on withdrawal of medications in systemic juvenile idiopathic arthritis (SJIA). Systemic juvenile idiopathic arthritis (SJIA) comprises 10–15% of juvenile arthritis. The introduction of anti-IL1 and anti-IL6 agents revolutionized the treatment of SJIA allowing the majority of patients to achieve inactive disease states [1]. SJIA can follow a monophasic (one episode of disease followed by remission), polyphasic (multiple flares of either systemic or arthritic features), or persistent (unremitting) course. There are no genetic or immunologic clues that allow treating physicians to determine which of these three courses patients will follow over time. Clinicians need to balance the risk of medication withdrawal causing disease flare versus the risk of continued medication exposure and related side effects

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