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The Desmoid Tumor Research Foundation

March 2026

The Health-Related Quality of Life of German Desmoid Patients: Results from the PROSa-DES and PROSa Study

Author Information

Martin Eichler 1, Rebekka Hoffmann 1, Christina Baumgarten 2, Jens Jakob 3, Bernd Kasper 3, Stephan Richter 4, Daniel Pink 5 6, Robert Grützmann 7, Jochen Schmitt 8, Markus K Schuler 4, Peter Hohenberger 9

1National Center for Tumor Diseases (NCT/UCC) Dresden, Medical Faculty, Technical University Dresden, 01307 Dresden, Germany. 2SOS-Desmoid, e.V., SPAEN Sarcoma Patients EuroNet e.V, 61200 Wölfersheim, Germany. 3Sarcoma Unit, Mannheim Cancer Center, Mannheim University Medical Center, University of Heidelberg, 68167 Mannheim, Germany. 4Clinic and Polyclinic for Internal Medicine I, University Hospital Carl Gustav Carus, 01307 Dresden, Germany. 5Sarcoma Center Berlin-Brandenburg, Helios Hospital Bad Saarow, University Hospital Greifswald, 17475 Greifswald, Germany. 6Sarcoma Center Berlin-Brandenburg, Helios Hospital Berlin-Buch, University Hospital Greifswald, 17475 Greifswald, Germany. 7Department of Surgery, University Hospital, 91054 Erlangen, Germany. 8Center for Evidence-Based Healthcare, University Hospital Carl Gustav Carus and Medical Faculty, Technical University Dresden, 01307 Dresden, Germany. 9Division of Surgical Oncology & Thoracic Surgery, Medical Faculty Mannheim of University of Heidelberg, 68135 Mannheim, Germany.

Publication

Cancers (Basel)

Summary

Desmoid-type fibromatosis (DT) is a rare, locally aggressive soft tissue tumor with a frequently chronic course and substantial impact on health-related quality of life (HRQoL). While international studies have demonstrated considerable symptom burden and psychosocial impairment, data from Germany are lacking. This study aimed to assess HRQoL in German patients and to identify factors associated with HRQoL. In this cross-sectional analysis, adult patients with histologically confirmed DT completed the EORTC QLQ-C30 and the disease-specific Desmoid-Type Fibromatosis Quality of Life Questionnaire (DTF-QoL). HRQoL scores were compared with reference data from the German general population, German sarcoma patients, and international DT cohorts. Sociodemographic, disease-, tumor-, and treatment-related factors associated with HRQoL were examined using multivariate linear regression analyses. A total of 155 patients were included (69.7% female; mean age 45.0 years). Compared with the German general population, DT patients reported clinically relevant impairments in role, social, and emotional functioning and higher symptom burden, particularly pain, fatigue, and insomnia. Compared with sarcoma patients, DT patients showed better physical, role, and social functioning, while emotional functioning and symptom burden were largely comparable. German DT patients reported consistently worse HRQoL than Dutch/UK cohorts and moderately worse outcomes than Indian cohorts. Female gender, unemployment or disability pension, intensive multimodal treatment, multiple lines of systemic therapy, and tumor location in the lower extremities were independently associated with poorer HRQoL. DT is associated with sustained and clinically meaningful HRQoL impairment. HRQoL is driven primarily by psychosocial and treatment-related factors rather than disease duration, supporting the concept of DT as a chronic condition requiring long-term, multidisciplinary supportive care.

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