Optimization of health care for young people with rheumatic diseases
Paediatric Rheumatology and Health services research
The group evaluates with substantial support by the Deutsche Rheumastiftung, the health care situation and outcomes of children, adolescents and young adults with inflammatory rheumatic diseases. Particular attention is paid to juvenile idiopathic arthritis (JIA).
In the National Pediatric Rheumatological Database (NPRD), around 15,000 patients with juvenile rheumatic diseases are recorded annually from 60 pediatric rheumatological centers. We were able to show that adolescents with JIA have a higher disease burden and a higher risk for an inactive lifestyle, being overweight and having other comorbidities. The frequency of mental health problems is currently being investigated by a short screener on the web-based platform KRhOKo as part of the interdisciplinary research network COACH.
In the JIA inception cohort ICON, 950 JIA patients and almost 500 healthy peers have been observed for approximately 6 years now. The group could show that sociodemographic and clinical parameters such as age at disease onset, JIA category, time between symptom onset and first visit to a rheumatologist, and higher family burden predict the outcome of JIA. In addition, we found an inverse correlation of the 25(OH)-vitamin D serum level with the risk of uveitis and a polyarticular-course of JIA.
The Juvenile arthritis Methotrexate/Biologics long-term Observation (JuMBO) is the follow-up register of the national JIA biologic register BiKeR, in which about 1,500 JIA patients are currently being observed from DMARD start in childhood into adulthood. To date, no serious safety problems have been identified. Rather, we found that the earlier an effective DMARD therapy is started, the higher the chance of drug-free remission and full functional capability and the lower the damage to the joints in adulthood.
In close cooperation with the Deutsche Rheuma-Liga e.V., we evaluate transition resources for young people with rheumatic diseases moving to adult care. According to NPRD data, transition readiness and disease-specific knowledge among young people with JIA are still suboptimal.
Close cooperation with many pediatric and adult rheumatological departments and ophthalmological units is the basis for the successful conduction of the observational studies.
Juvenile rheumatic diseases, juvenile idiopathic arthritis, health care, prognosis, transition
Prof. Dr. med. Kirsten Minden
Dr. rer. nat. Jens Klotsche
Dr. rer. medic. Florian Milatz
Dr. med. Claudia Sengler
Martina Niewerth, MPH
Dr. rer. nat. Susann Schweitzer
Deutsche Rheumastiftung, Research grant Kirsten Minden
Prof. Dr. Gerd Horneff, Asklepios Kinderklinik Sankt Augustin
PD Dr. Tilmann Kallinich, Universitätsmedizin Charité – Berlin
Prof. Dr. Dirk Foell, Universität Münster
Prof. Dr. Johannes-Peter Haas, Deutsches Zentrum für Kinder- und Jugendrheumatologie, Garmisch Partenkirchen
Dr. Gerd Ganser, St. Joseph-Stift, Sendenhorst
Dr. Anton Hospach, Klinikum Stuttgart
Dr. Kirsten Mönkemöller, Kinderkrankenhaus der Stadt Köln
Prof. Dr. Hans-Iko Huppertz, Klinikum Bremen Mitte
Dr. Angelika Thon, Medizinische Hochschule Hannover
Prof. Dr. Jasmin Kümmerle-Deschner, Universitätsklinik Tübingen
Dr. Ivan Foeldvari, Kinderrheumatologische Praxis am AK Eilbek, Hamburg and 50 other pediatric and more than 200 adult rheumatological sites
Prof. Dr. Arnd Heiligenhaus, Augenabteilung am St. Franziskus Hospital, Münster
PD Dr. Christoph Tappeiner, Universitätsklinik für Augenheilkunde, Bern, Schweiz and more than 200 ophthalmological sites
Dr. Heinrike Schmeling, University of Calgary, Canada – ICON cohort: Autoantibody analysis
Prof. Dr. Nico Wulffraat, Wilhelmina Ziekenhuis, Utrecht, Niederlande / Prof. Dr. Kimme Hyrich, The University of Manchester, United Kingdom / Prof. Dr. Nicola Ruperto, University of Genoa, Italy – Comorbidities in juvenile idiopathic Arthritis
Prof. Dr. Harald Baumeister, Universität Ulm / Prof. Dr. Reinhard W. Holl, Universität Ulm / PD Dr. Doris Staab, Universitätsmedizin Berlin Charité Berlin / Prof. Dr. Thomas Meissner, Universität Düsseldorf – Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare (COACH)
Falk Hoffmann, Universität Oldenburg – PROCLAIR
Prof. Dr. Burkhard Tönshoff / Prof. Dr. Petra Knaup, Universitätsklinikum Heidelberg – Kinderrheumatologie Online – Kerndokumentation (KRhOKo)
Prof. Dr. Michael Hofer, Centre Hospitalier Universitaire Vaudois, Lausanne, Schweiz – Juvenile Inflammatory Rheumatism Cohorte
Karl Cattelaens, Monika Mayer, Deutsche Rheuma-Liga, Bonn – Strengthening communication between physicians and young adults with rheumatic diseases in connection with the standardization of programs in transition to adult care
Deutsche Kinder-Rheumastiftung, München
Klotsche J, Minden K, Niewerth M, Horneff G. Time spent in inactive disease before MTX withdrawal is relevant with regard to the flare risk in patients with JIA. Ann Rheum Dis. 2018 Jul;77(7):996-1002
Sengler C, Zink J, Klotsche J, Niewerth M, Liedmann I, Horneff G, Kessel C, Ganser G, Thon A, Haas JP, Hospach A, Weller-Heinemann F, Heiligenhaus A, Foell D, Zink A, Minden K. Vitamin D deficiency is associated with higher disease activity and the risk for uveitis in juvenile idiopathic arthritis – data from a German inception cohort. Arthritis Res Ther. 2018 Dec 13;20(1):276
Listing M, Mönkemöller K, Liedmann I, Niewerth M, Sengler C, Listing J, Foell D, Heiligenhaus A, Klein A, Horneff G, Ganser G, Haas JP, Klotsche J, Minden K. The majority of patients with newly diagnosed juvenile idiopathic arthritis achieve a health-related quality of life that is similar to that of healthy peers – results of the German multicenter inception cohort (ICON). Arthritis Res Ther 2018;20:106
Heiligenhaus A, Klotsche J, Tappeiner C, Sengler C, Niewerth M, Liedmann I, Hoeft S, Walscheid K, Lavric M, Foell D, Minden K. Predictive factors and biomarkers for the 2-year outcome of uveitis in juvenile idiopathic arthritis: data from the Inception Cohort of Newly diagnosed patients with Juvenile Idiopathic Arthritis (ICON-JIA) study. Rheumatology (Oxford). 2018 Dec 26.
Minden K, Horneff G, Niewerth M, Seipelt E, Aringer M, Aries P, Foeldvari I, Haas JP, Klein A, Tatsis S, Tenbrock K, Zink A, Klotsche J. The time of DMARD start in Juvenile Idiopathic Arthritis determines the likelihood of a drug-free remission in young adulthood. Arthritis Care Res (Hoboken). 2018 Jul 25.
- ICON – Inception Cohort of newly diagnosed patients with juvenile idiopathic arthritis (funding period: 2015-2021); the ICON consortium consists of the DRFZ, the university Münster and university Essen and the ICON study group consists of 11 pediatric rheumatology centers
- COACH – Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare (funding period: 2017-2021); the consortium includes the universities Ulm, Potsdam, Düsseldorf and the DRFZ
- CiJuVIA – Comorbidities in juvenile idiopathic arthritis (funding 2017-2020); the consortium includes the universities Utrecht, Manchester, the Gaslini childrens´ hospital Genova and the DRFZ