Attitudes and Approaches for Withdrawing Drugs for Children with Clinically Inactive Nonsystemic JIA: A Survey of the Childhood Arthritis and Rheumatology Research Alliance

Abstract

Objective To assess the attitudes and strategies of pediatric rheumatology clinicians towards withdrawing medications for children with clinically inactive juvenile idiopathic arthritis (JIA). Methods Members of the Childhood Arthritis and Rheumatology Research Alliance (CARRA) completed an anonymous electronic survey on decision-making and approaches for withdrawing medications for inactive non-systemic JIA. Data were analyzed using descriptive statistics. Results Of 388 clinicians in CARRA, 124 completed surveys (32%), predominantly attending pediatric rheumatologists. The most highly ranked factors in decision-making for withdrawing medications were duration of clinical inactivity, drug toxicity, duration of prior activity, patient/family preferences, joint damage, and JIA category. Diagnoses of RF-positive polyarthritis and persistent oligoarthritis made respondents less likely and more likely, respectively, to withdraw JIA medications. Three-quarters of respondents waited for 6–12 months of inactive disease before stopping methotrexate or biologics, but preferences varied. There was also considerable variability in the strategies used to reduce, taper, or stop medications for clinically inactive JIA; most commonly, clinicians reported slow medication tapers lasting at least 2 months. For children on combination methotrexate-biologic therapy, 63% of respondents preferred stopping methotrexate first. Most clinicians reported using imaging only seldom or sometimes to guide decision-making, but most were also reluctant to withdraw medications in the presence of asymptomatic imaging abnormalities suggestive of subclinical inflammation. Conclusion Considerable variability exists among pediatric rheumatology clinicians regarding when and how to withdraw medications for children with clinically inactive JIA. More research is needed to identify the most effective approaches to withdraw medications and predictors of outcomes.

Treating juvenile idiopathic arthritis to target: recommendations of an international task force

“…Unfortunately, there is currently a lack of evidence-based data from clinical trials and clinical care and of guidelines to aid in the withdrawal of medications after disease remission in JIA. A recent survey among North American paediatric rheumatologists conducted by the Childhood Arthritis and Rheumatology Research Alliance has shown a large variability in the preferences of medication withdrawal for CID 67. No reliable clinical, biomarker or imaging indicators are currently available to identify patients at higher risk of experiencing disease flare after treatment discontinuation.…”

Re-treatment with etanercept is as effective as the initial firstline treatment in patients with juvenile idiopathic arthritis

“…It may reflect the widely used withdrawal strategy in Germany. Withdrawal of MTX first is also the preferred strategy in the USA and Canada [ 42 ].…”

Making Decisions About Stopping Medicines for Well‐Controlled Juvenile Idiopathic Arthritis: A Mixed‐Methods Study of Patients and Caregivers

“…In pediatric rheumatology, more qualitative research has focused on decisions about starting DMARDs, including studies on the perspectives of patients and families (21,23). Prior research about stopping JIA medications has focused on clinicians’ perspectives through interviews and surveys (19,21). Research examining the perspectives of adults with RA on stopping antirheumatic medicines has also highlighted similar tensions between risks of arthritis and risks of treatments, the role of uncertainty and unpredictability, the importance of achieving normalcy, and impacts of prior disease experiences (24,25).…”

“…Biomarkers for guiding decisions on treatment withdrawal have been tested (17) but not sufficiently validated for routine clinical use (18). Choices about stopping treatment are further complicated by insufficient data on effective withdrawal strategies (19,20).…”

“…Given the substantial uncertainty about how to manage inactive JIA, decisions about withdrawing treatment generally involve discussions between clinicians, patients, and families, each party with potentially different experiences, values, and priorities. Previous studies have examined clinicians’ motivations and priorities regarding stopping JIA medicines (19,21). Some studies have explored patients’ and parents’ perspectives on starting and adhering to JIA medicines (22,23).…”