Long‐Term Outcomes in Juvenile Idiopathic Arthritis: Eighteen Years of Follow‐Up in the Population‐Based Nordic Juvenile Idiopathic Arthritis Cohort

Abstract

Objective The present study was undertaken to assess the long‐term course, remission rate, and disease burden in juvenile idiopathic arthritis (JIA) 18 years after disease onset in a population‐based setting from the early biologic era. Methods A total of 510 consecutive cases of JIA with disease onset between 1997 and 2000 from defined geographic regions in Denmark, Norway, Sweden, and Finland were prospectively included in this 18‐year cohort study. At the follow‐up visit, patient‐reported demographic and clinical data were collected. Results The study included 434 (85%) of the 510 eligible JIA participants. The mean ± SD age was 24.0 ± 4.4 years. The median juvenile arthritis disease activity score in 71 joints (JADAS‐71) was 1.5 (interquartile range [IQR] 0–5), with the enthesitis‐related arthritis (ERA) category of JIA having the highest median score (4.5 [IQR 1.5–8.5], P = 0.003). In this cohort, 46% of patients still had active disease, and 66 (15%) were treated with synthetic disease‐modifying antirheumatic drugs and 84 (19%) with biologics. Inactive disease indicated by a JADAS‐71 score of <1 was seen in 48% of participants. Clinical remission off medication (CR) was documented in 33% of the participants with high variability among the JIA categories. CR was most often seen in persistent oligoarticular and systemic arthritis and least often in ERA (P < 0.001). Conclusion A substantial proportion of the JIA cohort did not achieve CR despite new treatment options during the study period. The ERA category showed the worst outcomes, and in general there is still a high burden of disease in adulthood for JIA.

Pain sensitivity in young adults with juvenile idiopathic arthritis: a quantitative sensory testing study

“…Children with onset between January 1, 1997, and June 30, 2000, were part of the 18 years follow-up of the multicenter cohort study, the Nordic JIA study [ 1 ]. Children with onset from July 1, 2000, to November 30, 2004, were part of a Norwegian extension of the Nordic JIA study using the same patient enrolment, data collection, and follow-up visits as previously described [ 1 , 26 , 27 ]. To ensure the referral of all eligible patients, all general practitioners and specialists in orthopedics, pediatrics, and rheumatology in the catchment areas repeatedly received letters reminding them of the study.…”

Current Review of Systemic Juvenile Idiopathic Arthritis: What Do Paediatricians Need to Know?

“…In another study in Turkey, almost 48% of patients reached remission while off medication [101]. In a longitudinal follow-up study based on a Nordic population of patients with JIA, the outcome was described as favourable for sJIA, with 53.8% of sJIA patients achieving remission while off medication, 8% having remission while on medication and 22% having active disease 18 years after disease onset [107]. In a very recent Canadian-based study (ReCCH-OUT), 71% of patients with sJIA achieved remission with no medication, the highest favourable result out of all JIA patients [108].…”

A Canadian evaluation framework for quality improvement in childhood arthritis: key performance indicators of the process of care

“…While contemporary treatments have resulted in excellent outcomes for many patients, there can be variability in outcomes with a severe disease course in about 20% of patients in contemporary cohorts [2]. For some with JIA, disease may persist into adulthood [3][4][5]. In a Norwegian study, after 30 years of follow-up, persistence of active disease or medication use was seen in 41% of patients with JIA, with up to 28% having a high symptom state [6].…”