Rheumatism is also present in young people
Optimal care for young people
The working group paediatric rheumatology examines approaches to further improve the care situation of children, adolescents and young adults suffering from rheumatic diseases. The foundation for this is the documentation and evaluation of processes and results of rheumatological care as well as the investigation of the clinical, psychosocial and economic consequences of rheumatic diseases under real care conditions.
How quickly do affected adolescents reach a rheumatologist after disease onset? Which drugs are prescribed at the beginning and during the course of the disease? Which comorbidities occur frequently during the course of the disease? How do affected young people deal with their disease?
Three large nationwide cohort studies form the foundation of our research activities:
National Paediatric Rheumatologic Database
The National Paediatric Rheumatologic Database (NPRD) has been providing nationwide data on processes and outcomes of rheumatological care for over 20 years. With currently more than 60 participating paediatric rheumatological centers, the number of children and adolescents with rheumatoid arthritis (Juvenile idiopathic arthritis, JIA), vascular diseases (vasculitis) and other inflammatory rheumatic diseases recorded annually is almost 14,000. According to prevalence estimates, the NPRD thus covers a large part of all cases of childhood rheumatism expected in Germany.
In addition, the documentation is used for focus questions, which are yearly added as special additional modules or implemented topics. In the past, these included topics such as health behavior, readiness to make the transition to adult care (transition) or participation in physical activities (including participation in school sports).
With the help of the comprehensively available data on individual childhood and adolescent rheumatic diseases, their everyday effects and the benefits of treatment, we were able to show that adolescents with JIA have a higher burden of disease and a higher risk of an inactive lifestyle, obesity and other comorbidities than younger children.
Web-based entry also possible
By the end of 2016, data collection in the NPRD was realized on a paper-and-pencil basis. Since January 2017, the participating sites have been offered a web-based platform in cooperation with Heidelberg University Children’s Hospital. The documentation is provided under the acronym KRhOKo (Kinderrheumatologie Online Kerndokumentation).
Currently, the web-based platform KRhOKo is also being used as part of COACH (Chronic Conditions in Adolescents: Implementation and Evaluation of Patient-centred Collaborative Healthcare), an interdisciplinary research network investigating the frequency of mental health problems in young rheumatics. The web-based platform KRhOKo is also used to collect data within the Innovationsfond-funded collaborative project ProKind (projects for classification, monitoring and therapy in paediatric rheumatology). ProKind investigates the treatment of newly diagnosed children and adolescents with rheumatoid arthritis and connective tissue diseases, what the treatment outcome is and whether current recommendations of the German Society for Child Rheumatology (GKJR) are being followed.
Also linked to the NPRD and KRhOKo, respectively, is the collaborative project TARISMA, which was launched this year and is funded by the German Federal Ministry of Education and Research (BMBF). The aim of this project is to identify risk factors for inadequate care of patients with rheumatic and non-inflammatory diseases of the musculoskeletal system and to consecutively develop approaches for improved care. The subproject ActiMON aims at assessing the physical activity as important precursor of adult morbidity in adolescents and young adults with different juvenile RMD (i.e., juvenile idiopathic arthritis, juvenile systemic lupus erythematosus and juvenile dermatomyositis). Physician- and patient-reported information on the young people ́s physical activity and health are provided by the NPRD. In subgroups of patients with the individual diseases, physical activity and sedentary behavior patterns will be assessed by accelerometry-based wearable motion detectors. The main objectives of ActiMON are to generate reliable information on physical activity and sedentary behavior patterns and to identify risk groups of patients with an inactive lifestyle. By revealing hurdles to an active lifestyle, measures can be developed to counteract comorbidities and adverse outcomes later in life.
JIA inception cohort ICON
Another important data source of our research is the BMBF-funded JIA inception cohort ICON (Inception Cohort Of Newly diagnosed patients with juvenile idiopathic arthritis), in which the development of more than 950 children, adolescents and young adults with JIA and about 500 healthy peers is being observed since 2010. The survey is being conducted at eleven paediatric rheumatological sites throughout Germany. The main goal is to gain a better understanding of the course of disease and the consequences of JIA.
Many of the affected children and adolescents achieved a symptom-free status within a short time. However, the symptom-free phase was different in length for every patient and was not always long-lasting. For over three quarters of the children and young people the rheumatic disease had already come to a standstill in the first year of treatment, at the end of the 2nd year however approximately 40% showed a moderate and/or high disease activity again.
Within the first two years of observation, the use of anti-inflammatory and analgesic drugs was significantly reduced. After 24 months, every 4th child with an inactive disease status no longer needed any medication at all. Two thirds of the patients received disease-modifying drugs. Our research group could also show that sociodemographic and clinical parameters such as age at disease onset, JIA category, time between onset of symptoms and first visit to a rheumatologist as well as higher familial burden are significant factors influencing the course of the disease.
The third fundamental instrument of our research is the JuMBO Register (Juvenile Arthritis-Methotrexate-Biologics long-term Observation), which since 2007 provides important information on the long-term safety of DMARDs (disease-modifying drugs) and long-term outcome in patients with JIA. In JuMBO, currently more than 1,700 young adults who developed JIA in childhood and were listed in the BiKeR children’s biologics registry (study director: Prof. Dr. Horneff, St. Augustin) are being monitored. Medical documentation is provided by more than 400 rheumatological practices and outpatient clinics as well as general practitioners and orthopedic sites.
Due to the treatment options with biologics, the drug therapy of patients with JIA has changed significantly over the last 20 years. Approximately two thirds of the participants have reached a status of remission or minimal disease activity. While most of them continue to rely on drug therapy, one in eight patients no longer requires any medication.
Transition as another research focus
Another research focus of the Minden lab is the so-called transition, which describes the transfer of adolescents and young adults with chronic diseases from child-centered to adult-oriented health care. An essential prerequisite for a successful transition of young rheumatics into adult medicine is the acquisition of adequate transition competence, i.e. sufficient knowledge of the disease, self-management skills and willingness to transfer. A successful transition process should therefore be based on agreed materials and at the same time be patient-oriented. Not only in rheumatology does this transition not yet succeed optimally: According to scientific studies, about one third of those affected drop out of drug treatment at this point.
With the help of the NPRD it can be determined, which sources of information young rheumatics know and how good their knowledge and their preparation for the change into adult medicine are. In order to facilitate the transition into adult care, the research group develops support services and information materials for young adults with rheumatic diseases in close cooperation with the Deutsche Rheuma-Liga. This work is based on transition projects funded by the German Federal Ministry of Health (BMG), whose scientific monitoring and evaluation has been and is being carried out by our working group in close cooperation with the Deutsche Rheuma-Liga.
According to data from the NPRD, the willingness to transition to adult care and the disease-specific knowledge of young people with JIA has meanwhile been expanded. The participation in a transition weekend camp, which lastingly expanded the disease knowledge and self-management of young rheumatics, also played a significant role in this. In general, the offers of support were accepted very positively, but they were still far too little known to both the affected patients and the group of people treating them. Consequently, still existing deficits make further efforts necessary.