Transitioning patients with juvenile idiopathic arthritis to adult care: the Nordic experience
AuthorMikola, Katriina; Rebane, Katariina; Arnstad, Ellen Dalen; Berntson, Lillemor; Fasth, Anders; Glerup, Mia; Herlin, Troels; Kautiainen, Hannu; Nielsen, Susan; Nordal, Ellen Berit; Peltoniemi, Suvi; Rygg, Marite; Rypdal, Veronika; Zak, Marek; Aalto, Kristiina
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