Deutscher Rheumatologiekongress 2026
Treatment outcomes of newly diagnosed children and adolescents with rheumatic disease at 12-month follow-up in the prospective multicenter observational study ProKind-Rheuma
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Introduction: Early and consequent treatment of newly diagnosed rheumatic diseases in children improves disease course and prognosis. Treat-to-Target (T2T) strategies facilitate the achievement of early disease inactivity. The Society of Pediatric Rheumatology published recommendations for JIA, cSLE, and JDM. The ProKind-Rheuma Study evaluates implementation and short-term outcomes, including disease inactivity, quality of life, daily functioning, and therapy satisfaction.
Methods: From January 2020 to April 2023, children newly diagnosed with JIA, cSLE, or JDM were enrolled at 23 pediatric rheumatology centers in the ProKind-Rheuma observational study. Participants were monitored for disease activity, daily functioning, and quality of life using disease-specific scores and validated questionnaires. Twelve-month follow-up data were available for 383 JIA, 31 cSLE, and 18 JDM patients.
Results: At 12 months, mean disease activity scores decreased significantly: cJADAS10 -9.6, SLEDAI-2k -7.6, and JDM-DAS -7.6. Inactive disease was achieved in 59.8% of JIA (cJADAS10 ≤ 1.1 for oligoarthritis, ≤2.5 for polyarthritis), 22,6% of cSLE (SLEDAI-2k = 0 and PhGA < 2), and 33.3% of JDM (3 out of 4: CK normal, CMAS ≥ 48, MMT-8 ≥ 78, PhGA < 1) patients.
Overall, disease-related quality of life improved remarkably (mean PedsQL 4.0 scores 82–86 at 12 months). However, disease-specific quality of life remained lower for JDM (mean PedsQL 3.0: 60.5 ± 21.3) and JIA (72.1 ± 23.1) regarding treatment burden, and for cSLE (75.2 ± 26.8) regarding worries.
JDM patients had the largest impairment in daily functioning both at baseline and follow-up (QHAQ-Scores: 0.9 ± 1.0 and 0.4 ± 0.5, respectively). Fatigue was a persistent issue especially for cSLE patients.
Medication side effects were reported in 31% (JIA), 27% (cSLE), and 43% (JDM) of patients, causing treatment discontinuation in about 30% of cases. Over 90% of patients took medication regularly. Satisfaction with therapy varied: 55% of cSLE patients were not or only partly satisfied, while 85% of JIA patients reported being satisfied.
Conclusion: Current treatment strategies led to significant improvements in disease activity and daily functioning. However, only a minority of cSLE and JDM patients reached inactive disease after 12 months, with ongoing limitations in daily functioning, quality of life, and therapy satisfaction. Therapy adherence was high despite commonly reported side effects.
