Background/Purpose: Juvenile Idiopathic Arthritis (JIA) is the most common rheumatic disease of childhood. Treatments include disease modifying anti-rheumatic drugs, commonly methotrexate (MTX), biologics including Etanercept (ETN) and Adalimumab (ADA). However, medication adherence may be impaired by fear of starting medication, access to these medications, or their side effects (barriers). Common side effects of MTX are nausea, abdominal pain, transaminitis, oral ulcers, and leukopenia_.  Side effects of biologics are infections, possible malignancy, and injection site reactions (ISRs). We describe patient perceptions of potential barriers to medication adherence in JIA.

Methods: We enrolled 101 children diagnosed with JIA and treated with MTX, ETN and/or ADA for at least 3 months or greater than 24 months. Subjects and their parents completed self-administered questionnaires about perceived barriers to medication adherence compliance.

Results: Of all subjects, 96 used MTX alone or with ETN/ADA.  One or more barriers to MTX use was reported by 58% of subjects (Table 1) whereas 42% of subjects reported no barriers. While taking MTX, 52% reported nausea/vomiting (Table 2). In all 14% of patients discontinued MTX due to side effects.

ETN was used by 21 patients. One or more barriers to ETN use was reported by 57% of subjects including difficulty with access (19%) whereas 43% of subjects reported no barriers. While taking ETN, 43% reported ISRs as a side effect. In all, 15% discontinued ETN due to side effects.

ADA was used by 35 patients. One or more barriers to ADA use was reported by 71% of subjects, including difficulty with access (31%), whereas no barriers were experienced by 29% of patients. While taking ADA, 63% reported ISRs. In all, 20% of patients discontinued ADA due to side effects.

For all three drugs, patients reported a decrease in their fear after they used them for at least 3 months (Table 1 pre and post).  In fact, 65% stated that they wished they had begun a biologic medication sooner.

Conclusion: While a majority of subjects expressed concerns prior to starting medications, these lessened after taking them. A substantial proportion of respondents indicated they would have started a biologic sooner. Providing this information to patients prior to starting biologics may help alleviate their concerns and improve medication adherence.