Thanks to the patients: A better understanding of rheumatism with their support

Inflammatory rheumatism affects around 1.8 million people in Germany. World Rheumatism Day on October 12 draws attention to the effects of rheumatic diseases: many patients suffer from pain, exhaustion and occupational limitations. Using patient-reported data, epidemiologists at the DRFZ highlight gaps in patient care and also the challenges affected persons face in everyday life and at work. Thanks to the help of those patients, the effects of the disease are better recognized.

Many people affected by rheumatism ask themselves: How much does a rheumatic disease restrict my health and my everyday life? Can I continue in my job? Is pregnancy possible?

Patients themselves give answers to these questions: Over 30,000 adults and children or their parents regularly fill out questionnaires in rheumatology facilities in Germany, in which they provide information about their condition and their disease. This data is essential for research in the Epidemiology and Health Services Research program area at the DRFZ.  Scientists analyze this data in order to understand the effects of rheumatic diseases on health, daily life, work and school. Thanks to the feedback from those affected, we now know which consequences of the disease are not yet sufficiently prevented despite treatment:

Pain and fatigue: Half of all patients suffer from moderate to severe pain, exhaustion, fatigue and sleep disorders as well as a reduced sense of well-being.

Restrictions at work: One in ten patients is unable to work due to rheumatoid arthritis. One in five patients was on sick leave due to rheumatoid arthritis in the previous year, and one in four patients due to axial spondyloarthritis. The majority of patients with axial spondyloarthritis describe their ability to work as limited.

Gaps in care: One in two adolescents fail to transfer from pediatric rheumatology care to adult care.

Family life: One in three mothers with an inflammatory rheumatic disease has difficulties caring for their child in the first two years of life.

Some of these results were presented at this year’s Rheumatology Congress in Düsseldorf. They show that despite promising treatment options, many patients are still restricted in their work and social activities. We would like to draw attention to this on World Rheumatism Day.

Our research would not be possible without the support of patients. With their answers, they significantly contribute to our understanding of rheumatic diseases and their consequences. A big thank you for this!