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Time to diagnosis in juvenile idiopathic arthritis: a french perspective
Laura Aoust1, Linda Rossi-Semerano1,2, Isabelle Koné-Paut1,2
1Division of Pediatric Rheumatology, Bicêtre Hospital, APHP, University of Paris SUD, 78 rue du Général Leclerc, Le Kremlin-Bicêtre, Cedex, 94270, France.
Insights
Diagnosing juvenile idiopathic arthritis (JIA) is often delayed due to low awareness among general practitioners and emergency physicians. Improving physician education and strengthening pediatric rheumatology networks are crucial for faster JIA diagnosis and better patient care.
Area of Science:
- Pediatric Rheumatology
- Rheumatic Diseases
- Patient Journey Analysis
Background:
- Juvenile idiopathic arthritis (JIA) is a rare pediatric rheumatic disease.
- Lack of awareness among general practitioners (GPs) and pediatricians contributes to diagnostic delays.
- Early diagnosis is critical for effective management and improved patient outcomes.
Purpose of the Study:
- To analyze the patient's journey and time to diagnosis for JIA.
- To identify factors contributing to diagnostic delays in JIA.
- To emphasize the need for enhanced awareness and education regarding JIA.
Main Methods:
- Retrospective cohort study of 67 patients diagnosed with JIA.
- Analysis of patient referrals, initial diagnoses, and time to definitive diagnosis.
- Inclusion of patients from a pediatric rheumatology department between July 2002 and January 2015.
Main Results:
- Patients visited a mean of three physicians before JIA diagnosis, often starting in emergency rooms.
- Common initial misdiagnoses included reactive and septic arthritis.
- While the median total time to diagnosis was 3 months, the pathway to a pediatric rheumatologist was complex and lengthy.
Conclusions:
- The patient journey to JIA diagnosis is complex, involving multiple referrals and initial misdiagnoses.
- Improving awareness and education among GPs and emergency physicians is essential.
- Strengthening pediatric rheumatology networks may improve the speed and accuracy of JIA diagnosis.
Background:
Juvenile idiopathic arthritis (JIA) is a rare disease that is not widely known by paediatricians and general practitioner (GP) leading to diagnostic error and delayed care provision. We aimed to analyse patient's journey and time to diagnosis of JIA (delay from the first symptom to the diagnosis of JIA). We performed a retrospective cohort study of 67 patients diagnosed with JIA and seen in the paediatric rheumatology department of the Kremlin Bicêtre Hospital, between July 2002 and January 2015. Patients were selected for analysis in order to represent an equal distribution of five JIA subtypes: oligoarticular onset (21), polyarticular onset (13), enthesitis-related arthritis (17), and systemic onset (16).
Results:
Sixty-seven patients were finally analysed (42 girls). Before JIA diagnosis was made, patients had visited a mean of three physicians (3.6 ± 1.4 (mean; SD)). Emergency room physicians (52%) were the first patient's referral before GP (42%). Paediatric rheumatologists were mostly seen as third referral (52% versus 3% at first referral). Reactive arthritis (34%) and septic arthritis (24%) represented both the most common initial diagnosis. JIA was suspected after an average median time delay of 3 months (0.26-81.2) except for 25 patients (37%): SJIA (n = 9), ERA (n = 7), OAJIA (3) and POJIA (n = 6) for whom diagnosis was suspected straightaway. In most cases (88%), JIA was established by paediatric rheumatologists. Surprisingly, the median total time to diagnosis in our population was rather short (3 months). Paediatric rheumatologist played a major role in making the diagnosis but the journey to reach them was long and complex with multiple referrals. These results reinforce the necessity of improving GP and emergency physician's awareness and education on paediatric rheumatic diseases as the importance of a strong network in paediatric rheumatology to improve patient's level of care.
Conclusion:
We highlighted the complex patient's journey to diagnosis in children with JIA and made assumptions that reference center might reduce time to diagnosis although not statically proven. Further analysis with a larger number of patients might be needed to better investigate this probability.
