Session Type: Abstract Submissions (ACR)
A minority of patients with polyarticular JIA enter adulthood in drug free remission. Thus, patients are in need of care beyond adolescence. There is little information how patients´ health status changes after discharge from pediatric care. We therefore investigated changes in the patients´ health status before and after the transfer from pediatric to adult health care.
Data from patients were considered who were prospectively followed in the JIA biologic register BiKeR and in the follow-up register JuMBO for at least two additional years. Disease activity (physicians´ global assessment on a numerical rating scale 0-10 [NRS]) and patient-reported outcomes (PROs; i.e. global assessment of disease activity, pain, overall well-being on NRS, functional status by CHAQ/HAQ) were assessed from inclusion in BiKeR up to the last follow-up in JuMBO.
The eligible 654 patients were enrolled in BiKeR with a mean disease duration of 5.6 years (ys) at the start of a biologic (66.8%) or non-biologic DMARD (33.2%). The whole observation period of patients comprised 8.2 ys. During the years (mean 2.6) in pediatric care, i.e. from enrollment until the last visit in BiKeR, all PROs significantly improved: overall well-being from 4.5 to 2.1 (mean), pain level from 4.6 to 1.9, functional status (CHAQ-score) from 0.75 to 0.35. In contrast to this trend towards a steady improvement in patients´ health state in pediatric care, PROs significantly worsened after discharge from pediatric care (p < 0.001). At the last follow-up in JuMBO, when patients were at the age of 23 ys (mean) and had a disease duration of 14.2 ys, the mean disease activity was 2.6, pain level 2.8, and overall well-being 2.9. At that time, more patients had an active disease (NRS>0; 71 vs. 57%) and reported pain (78 vs. 56%) and restrictions in overall well-being (86 vs. 58%) than at the last visit in pediatric care.
Adult health care providers rated the patients´ disease activity at first documentation in JuMBO lower than pediatric rheumatologists at the last visit in pediatric rheumatology care (1.8 vs. 2.1), which is in contrast to patients´ self-reports. They also rated the disease activity lower than the patients did at last observation in JuMBO (1.9 vs. 2.6). The correlation between physician and patient scores for disease activity was better during pediatric than adult care (0.56 vs. 0.51).
The health state of patients with long-standing JIA significantly worsens after discharge from pediatric care. The reasons for this have to be explored. In addition, there are larger discrepancies between physician- and patient-reported outcomes in adult care than in pediatric care.
AbbVie, Pfizer, and Roche ,
AbbVie, Novartis, Pfizer, and Roche,
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/the-health-status-of-patients-with-juvenile-idiopathic-arthritis-jia-significantly-worsens-after-transfer-from-pediatric-to-adult-care/