Background: Effective management of juvenile idiopathic arthritis (JIA) requires timely treatment initiation, appropriate escalation, and sustained adherence. Despite this, many children continue to experience ongoing disease burden, including frequent flares and reliance on corticosteroids. Understanding behavioural and contextual factors influencing treatment management is essential to optimise care.

Objectives: To outline and analyse real-world patterns of treatment initiation, escalation, adherence and symptom management in JIA, and to identify key barriers to optimal treatment based on caregiver-reported behaviours and perceptions.

Methods: A total of 121 quantitative and 21 qualitative interviews were conducted with caregivers of JIA patients across Canada, Germany, Italy and Brazil as part of Research Partnership’s Living With JIA patient research study. The JIA types in focus were polyarticular, oligoarticular and systemic JIA. Quotas were set in the quantitative survey on age of child with JIA, 50% aged 2-11 years, 50% aged 12-17 years.

Results: Children with JIA continued to exhibit high disease burden, with frequent flares reported despite ongoing treatment. Over half of children had used corticosteroids in the previous 12 months, often multiple times, primarily to manage flare-ups or acute symptom worsening. Corticosteroids were commonly used as a short-term symptom management strategy, with limited reported concern compared to longer-term treatments. Analysis of treatment management identified caregivers as a key barrier to children starting JIA treatment. Delays to treatment initiation were most often associated with caregiver concerns about side effects and a desire to research treatments prior to initiation. For some patients, affordability further contributed to delays in starting more advanced treatments. Barriers were also evident at treatment escalation. The majority of caregivers whose children experienced persistent or increasing flare-ups did not request a change in treatment, commonly associated with fear of the unknown, concerns about side effects, and worry about cost. Qualitative findings suggested that some caregivers came to accept ongoing symptoms and flares as an unavoidable part of JIA. Caregiver apprehension emerged as a key barrier in treatment initiation and switching. Concerns regarding side effects, long-term safety, polypharmacy and limited emotional support from healthcare professionals delayed or prevented treatment initiation and escalation. These concerns were further reflected in adherence behaviours, with approximately 40% of caregivers reporting incomplete adherence, including stopping treatment once symptoms subsided or when the child appeared to be feeling better.

Conclusions: Our findings show that barriers to treatment initiation, escalation and adherence in juvenile idiopathic arthritis are closely linked to caregiver apprehension. Concerns regarding side effects, long-term safety, treatment burden and affordability contribute to delays, reluctance to escalate therapy, and incomplete adherence, often alongside continued disease activity and reliance on corticosteroids. These findings highlight the importance of enhanced communication, emotional support and shared decision-making to address treatment-related concerns and support timely, sustained disease control in children with JIA.

REFERENCES: NIL.

Acknowledgments: NIL.

Disclosure of Interests: None declared.