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Transitioning patients with juvenile idiopathic arthritis to adult care: the Nordic experience
Katriina Mikola1, Katariina Rebane2, Ellen Dalen Arnstad3,4
1New Children's Hospital, Pediatric Research Center, University of Helsinki and Helsinki University Hospital, Stenbackinkatu 9, 00290, Helsinki, Finland. Katriina.Mikola@hus.fi.
Insights
Many juvenile idiopathic arthritis patients lack proper transition to adult care, with 39% of untransferred individuals showing active disease. This highlights critical gaps in healthcare follow-up for young adults with JIA.
Area of Science:
- Rheumatology
- Pediatric Rheumatology
- Adolescent Health
Background:
- Juvenile idiopathic arthritis (JIA) management involves transitioning patients from pediatric to adult care.
- Current transition protocols and practices vary globally.
- This study investigates outcomes and practices within Nordic countries.
Purpose of the Study:
- To examine transferral rates and disease activity post-transition in JIA patients.
- To assess disease- and health-related outcomes following the transition of care.
- To introduce and analyze transition practices in Nordic countries.
Main Methods:
- A population-based Nordic JIA cohort study included 408 participants with disease onset between 1997-2000.
- An 18-year follow-up was conducted.
- Patients were retrospectively categorized into: directly transferred, later referred, or never transferred groups.
Main Results:
- Direct transfer to adult care occurred in 40% (163/408) of JIA patients.
- The cumulative transition rate was 52%, with significant inter-center variations.
- Among 195 never-transferred patients, 39% exhibited active disease at follow-up.
Conclusions:
- A significant proportion of JIA patients remain without adequate adult healthcare follow-up.
- Active disease in untransferred JIA patients underscores the need for improved transition strategies.
- Revising transition practices is crucial to ensure continuous and appropriate care for JIA patients.
Background:
With juvenile idiopathic arthritis (JIA), there are several protocols and practices used worldwide for the transition from paediatric to adult care. In this study, we examined the transferral rates and disease activity after transition, as well as the disease- and health-related outcomes. We also introduce the transition practices employed in the Nordic countries.
Methods:
The study population comprised 408 participants with a disease onset from 1997 to 2000 who attended an 18-year follow-up visit in this population-based Nordic JIA cohort study. The patients were retrospectively divided into three subgroups: Patients transferred directly from paediatric care to adult rheumatology care, patients referred there later, and patients never transferred during the 18-year follow-up period.
Results:
One hundred and sixty-three (40%) JIA patients had been directly transferred to an adult clinic. The cumulative transition rate was 52%, but there were significant differences between the participating centres. Fifty patients had later been referred to an adult clinic. Among the 195 patients who had never been transferred, 39% were found to have disease activity at the study visit.
Conclusion:
This study highlights the need to reconsider transition practices to avoid our undesirable finding of patients with disease activity in JIA, but no appropriate health care follow-up.
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