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Access to paediatric rheumatology care in juvenile idiopathic arthritis: what do we know? A systematic review
Aurélie Chausset1,2, Bruno Pereira3, Stéphane Echaubard1
1Department of Pediatrics, Clermont Ferrand University Hospital, Clermont-Ferrand.
Insights
Access to pediatric rheumatology (PR) care for juvenile idiopathic arthritis (JIA) patients can be lengthy, with median times of 3-10 months. Factors like swelling and fever shorten referral times, while enthesitis and pain prolong them.
Area of Science:
- Pediatric Rheumatology
- Systemic Autoimmune Diseases
- Healthcare Access
Background:
- Juvenile idiopathic arthritis (JIA) is a complex autoimmune condition requiring timely specialist intervention.
- Access to pediatric rheumatology (PR) care is crucial for effective JIA management.
- Understanding referral pathways and associated delays is essential for improving patient outcomes.
Purpose of the Study:
- To systematically review the time to access appropriate care for JIA patients.
- To analyze the referral pathway prior to the first PR visit.
- To identify factors associated with delayed referrals in JIA.
Main Methods:
- Systematic literature review of multiple electronic databases up to February 2020.
- Inclusion of studies published after 1994, focusing on the unified term JIA.
- Analysis of 15 selected articles, primarily from Europe.
Main Results:
- Median time to first PR visit ranged from 3 to 10 months.
- Systemic-onset JIA, swelling, fever, and elevated inflammatory markers (CRP/ESR) were linked to shorter referral times.
- Enthesitis, older age at onset, and pain were associated with longer referral times, irrespective of healthcare system variations.
Conclusions:
- This is the first systematic review summarizing research on PR access for JIA patients.
- The JIA care pathway is complex, with delays influenced by multiple factors.
- Standardized guidelines and fast-track referrals are needed to improve timely access globally, considering healthcare disparities.
Objective:
This review examines time to access appropriate care for JIA patients and analyses the referral pathway before the first paediatric rheumatology (PR) visit. We also describe factors associated with a longer referral.
Methods:
We performed a systematic literature review, screening electronic databases (PubMed, Web of Science, EMBASE, Cochrane library and Open Grey database) up to February 2020. Articles written before 1994 (i.e. before the introduction of the unifying term JIA) were excluded.
Results:
From 595 nonduplicate citations found, 15 articles were finally included in the review. Most of the studies took place in Europe. The median time to first PR visit ranged from 3 to 10 months, with some disparities between referral pathway and patient characteristics. Patients with systemic-onset JIA had the shortest time to referral. Some clinical and biological factors such as swelling, fever, and elevated CRP and/or ESR were associated with a shorter time to first PR visit. Conversely, enthesitis, older age at symptom onset or pain were associated with a longer time. Whatever the country or world region, and despite disparities in healthcare system organization and healthcare practitioner availabilities, times to access PR were not wide-ranging.
Conclusion:
This is the first systematic review to summarize research on access to PR for JIA patients. The pathway of care for JIA patients remains complex, and reasons for delayed referral depend on several factors. Standardized clinical guidelines and fast-track pathways to facilitate prompt referral to specialized teams have to allow for worldwide disparities in healthcare provision.
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