Background: Juvenile idiopathic arthritis (JIA) is a heterogeneous inflammatory disease in which early diagnosis is critical to reduce disease burden and long-term complications. However, early symptoms are often non-specific, increasing the risk of misdiagnosis and delayed referral to specialist care.

Objectives: To outline and analyse caregiver-reported misdiagnosis and diagnostic delay in children with JIA, and to explore the emotional impact of these delays on families.

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: Delays in diagnosis were attributed to factors related to both caregivers and the healthcare system. From initial symptom onset, most patients presented for medical evaluation within four months; delays at this stage were primarily due to caregivers perceiving symptoms as insufficiently serious or attributing them to alternative conditions. Many caregivers also attempted initial management with over-the-counter medications prior to seeking medical care. Healthcare-related delays included limited availability of timely primary care appointments and prolonged referral pathways from primary care to paediatric rheumatology. Misdiagnosis occurred in approximately one-fifth of patients prior to final diagnosis, most commonly as growing pains or viral illness. The mean time from symptom onset to diagnosis was approximately eight months. Qualitative findings highlighted substantial caregiver frustration and anxiety, as well as feelings of being dismissed by healthcare professionals, particularly during repeated primary care consultations. Diagnostic delays were perceived to exacerbate emotional distress and prolong child suffering.

Conclusions: Our results show that delays in diagnosing JIA arise from both caregiver- and healthcare-related factors. Early symptoms are often non-specific, leading caregivers to delay seeking care or attempt initial self-management, while limited access to appointments, slow referral processes and frequent misdiagnosis further prolong the diagnostic pathway. Notably, delays often persist even after families first present to healthcare services, contributing to caregiver frustration, anxiety, and perceptions of being dismissed, as well as prolonged child suffering. Together, these results highlight the need for improved support during the diagnostic journey, including clearer communication, better guidance for caregivers when symptoms persist, and more efficient pathways to paediatric rheumatology assessment. Future research should focus on identifying where delays most commonly occur and testing practical approaches to reduce time to diagnosis while supporting families during periods of diagnostic uncertainty.

REFERENCES: NIL.

Acknowledgments: NIL.

Disclosure of Interests: None declared.