Psychological burden in systemic sclerosis
People living with systemic sclerosis may experience substantial psychological distress, yet real-world evidence from non-clinical settings in Germany has been limited.
- Partners4Patients Foundation's role
- Study implementation partner: Partners4Patients Foundation provided the resources, research expertise, and practical support needed to turn a community-generated idea into a robust study. Its contribution included collaborative online questionnaire development, data collection, and data analysis.
- Outcome
- The study generated real-world evidence of a substantial unmet need for disease-specific psychological and psychosocial support among people living with systemic sclerosis in Germany. The findings were presented at the 2026 German Rheumatology Congress, bringing scientific attention to a research question raised by the patient community.
About the project
The project began with the patient community. Emma Reil of Sklerodermie Selbsthilfe e.V. approached Partners4Patients Foundation with the initial idea, and the research was then co-created with patient representatives and healthcare professionals. This collaborative approach helped ensure that the study addressed questions that were understandable, relevant, and meaningful to the community.
An online survey was developed to assess psychological distress, coping strategies, and support needs outside clinical settings.
A total of 535 people participated, and 492 completed the questionnaire. Forty percent reported moderate psychological distress and 16% severe distress. Half of participants rated the negative influence of psychological distress on the course of their disease at 7 or higher on a ten-point scale, and 89% expressed interest in psychological care tailored specifically to systemic sclerosis.
The results were presented at the 54th German Rheumatology Congress in Leipzig in September 2026. The project demonstrates how a community-generated idea can become scientifically recognized evidence when patient insight is combined with research expertise, resources, and practical implementation support.