Health Services Research

Using data from the nationwide Core Documentation of the Regional Cooperative Rheumatology Centers, we investigate care-related issues such as the prevalence of rheumatic diseases, medication treatments, and the disease burden on affected individuals.

Each year, clinical and patient-reported data from more than 10,000 people with inflammatory rheumatic diseases are collected. This continuous documentation, which has been ongoing since 1993, provides valuable insights into how new therapies and changes in medical guidelines impact routine care. It also helps identify gaps in healthcare and examine their relation to factors such as age, gender, and social status.

We welcome every rheumatology facility interested in participating in the Core Documentation.

For more information, please visit our new project website at kerndokumentation.de.

Recent results highlight new treatment options for vasculitis, a decline in corticosteroid use for rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE), and high therapy satisfaction among patients. However, they also reveal persistent challenges, such as frequent fatigue in SLE patients.

For updates, visit:(kerndokumentation.de/aktuelles).

As part of the research network (TARISMA) (Targeted Risk Management in Musculoskeletal Diseases),funded by the German Federal Ministry of Education and Research, we analyzed comorbidities and medication use in people with rheumatic diseases using billing data from the BARMER health insurance. Among our findings, we showed that approximately 2% of individuals with rheumatoid arthritis (RA) have interstitial lung disease (ILD)—a severe and relatively rare comorbidity of RA that presents significant challenges in treatment selection. Various immunosuppressive medications were prescribed, and many affected individuals also required corticosteroids and painkillers. Additionally, we found that patients under rheumatological care were more likely to receive biologic therapy compared to those without specialist rheumatology consultations.

Using data from the(NAKO-health study) we are also investigating the prevalence of depression, anxiety disorders, and cognitive function in individuals with inflammatory rheumatic diseases.

RheumaFacts is an initiative of the European Alliance of Associations for Rheumatology (EULAR) dedicated to collecting data on rheumatic diseases and their healthcare provision in all countries represented within EULAR. For Germany, we compile these figures in collaboration with the German Society for Rheumatology (DGRh).

The EULAR Impact of RMDs Survey is a web-based online survey for individuals across Europe, assessing the impact of rheumatic diseases. It includes questions about diagnosis and medical history, access to and quality of care (both medical and non-pharmacological treatments), disease burden, demographic status, and socioeconomic situation.

The Epidemiology and Health Services Research program at DRFZ is actively involved in the planning, development, and implementation of this survey.

Rheumatic diseases also affect women and men differently. We have compiled existing evidence on this topic in a review article for internal medicine (news). In collaboration with the  Commission for Equal Opportunities of the German Society for Rheumatology (DGRh), we aim to further expand gender research in rheumatology. Our goal is to identify differences in healthcare access, treatment response, and the safety of antirheumatic medications.

Based on a systematic literature review of all available data, we estimated how many people in Germany have an inflammatory rheumatic disease (news). In recognition of this research, we were awarded the  Wolfgang Schulze Foundation Science Prize in October 2023 (news). You can find all figures for individual diseases on the German Society for Rheumatology  website.

Currently, under the initiative of the German Society for Rheumatology (DGRh)we are working together with the Professional Association of German Rheumatologists (BDRh), the Association of Rheumatology Acute Care Clinics (VRA) and the German Rheumatism League (DRL) to develop the new Memorandum on Rheumatology Care in Germany. As part of this, we provide key data, such as the number of rheumatology specialists working in private practices and hospitals.

Using data from the NDB, we showed that the patient questionnaire RAID (Rheumatoid Arthritis Impact of Disease) is suitable for other inflammatory rheumatic diseases beyond RA to measure the disease impact on the quality of life of those affected. We analysed this with questionnaires from patients with spondyloarthritis, polymyalgia rheumatica, Sjögren’s syndrome, lupus erythematosus and myositis. For many years, patients from the NDB have answered the RAID questions regarding pain, functional impairment, fatigue, sleep, physical and psychological well-being, as well as coping with the disease.

In cooperation with a large German health insurance fund, we are examining claims data of persons with inflammatory rheumatic diseases. This provides an insight into health care for patients with rheumatic diseases, regardless of specialist or general care.

In the TARISMA (Targeted Risk Management in Musculoskeletal Diseases) network, funded from 2020-2023 by the Federal Ministry of Education and Research, we  investigate the occurrence of comorbidities and their impact on the rheumatic diseases. When an inflammatory rheumatic disease such as Sjögren’s syndrome or lupus erythematosus is diagnosed, other chronic diseases such as hypertension, osteoporosis or depression are often already present. The care of multimorbid patients is demanding due to the large number of prescribed medications and the high burden of disease for those affected, and requires interdisciplinary cooperation.  In the TARISMA network, we cooperate closely with the Pharmacoepidemiology and Pediatric Rheumatology and Health Services Research groups of the DRFZ.

With the claims data, we demonstrated that approximately 2% of individuals with rheumatoid arthritis have interstitial lung disease. Various disease-modifying antirheumatic drugs were prescribed, and in addition, many affected individuals were prescribed glucocorticoids and pain medication including opioids. Persons in rheumatological care received therapy with a biologic DMARD more frequently than persons without rheumatological specialist contact.

Group leader
Dr. Johanna Callhoff

Scientists 
Katinka Albrecht, MD
Katja Thiele, Project coordination

Doktoral Student
Carlo Veltri

Data management
Nora Baer

Research assistant
Sabine Achtelstetter

PD Dr. Tobias Alexander, Prof. Dr. Thomas Dörner, PD Dr. Sarah Ohrndorf, Department of Rheumatology and Clinical Immunology Prof. Dr. Stephan Willich, Institute of Social Medicine, Epidemiology and Health Economics

PD Dr. Tobias Alexander, Prof. Dr. Thomas Dörner, PD Dr. Sarah Ohrndorf, Department of Rheumatology and Clinical Immunology Prof. Dr. Stephan Willich, Institute of Social Medicine, Epidemiology and Health Economics

• Prof. Martin Aringer, Devision of Rheumatology, Faculty of Medicine Carl Gustav Carus at the TU Dresden
• Prof. Xenofon Baraliakos, Prof. Uta Kiltz, Ruhr Universität Bochum, Rheumazentrum Ruhrgebiet, Herne
• Prof. Thorsten Eidner, University Hospital Jena
• Dr. Martin Feuchtenberger, Rheumatology, Med Bayern Ost, Burghausen
• Sonja Froschauer, Theresia Muth, Berufsverband Deutscher Rheumatologen (BDRh)
• Prof. Martin Aringer, Devision of Rheumatology, Faculty of Medicine Carl Gustav Carus at the TU Dresden
• Prof. Xenofon Baraliakos, Prof. Uta Kiltz, Ruhr Universität Bochum, Rheumazentrum Ruhrgebiet, Herne
• Prof. Thorsten Eidner, University Hospital Jena
• Dr. Martin Feuchtenberger, Rheumatology, Med Bayern Ost, Burghausen
• Sonja Froschauer, Theresia Muth, Berufsverband Deutscher Rheumatologen (BDRh)

• Stefanie Leue, Konrad Goetz, Abbvie
• Heike Carnarius, Sylvia Hartmann, GSK
• Dr Kirsten Gescher, Medac
• Dr Pascal Klaus, Thomas Meng, Sabine Zessin, Pfizer
• Dr Wojciech Dombrowsky, Dr Anja Schwarz, Svenja Schulz, UCB
• Dr Margot Gurrath, Galapagos
• Dr Kathrin Rogge, Alexandra Helm, AstraZeneca

• Prof. Paula de Pablo, University of Birmingham, Institute of Inflammation and Ageing, Research into Inflammatory Arthritis Center Versus Arthritis and MRC-Versus Arthritis Centre für Muskuloskeletal Ageing Research, Birmingham, UK
• Prof Thomas Dietrich, The School of Dentistry, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK
• Prof Pedro Machado, University College London, UK
• Dr Anna Molto, Rheumatology Department of Cochin Hospital, Paris, Francea