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The Desmoid Tumor Research Foundation

June 2023

Physical symptom burden in patients with desmoid-type fibromatosis and its impact on health-related quality of life and healthcare use.

Author Information

Schut, Anne-Rose W.; de Bruin, Leanne E.; de Rooij, Belle H.; Lidington, Emma; Timbergen, Milea J. M.; van der Graaf, Winette T. A.; van Houdt, Winan J.; Bonenkamp, Johannes J.; Jones, Robin L.; Grünhagen, Dirk J.; Sleijfer, Stefan; Gennatas, Spyridon; Verhoef, Cornelis; Husson, Olga

1Department of Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, The Netherlands. 2Department of Surgical Oncology, Erasmus MC Cancer Institute, Rotterdam, The Netherlands. 3Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands. 4CoRPS-Center of Research on Psychology in Somatic Diseases/Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands. 5Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, UK. 6Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands. 7Department of Surgical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands. 8Department of Surgical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands. 9Division of Clinical Studies, Institute of Cancer Research, Royal Marsden NHS Foundation Trust, London, UK. 10Department of Medical Oncology, Guy's and St Thomas' NHS Foundation Trust, London, UK.

Publication

Cancer Med

Summary

BACKGROUND: Desmoid-type fibromatosis (DTF) has a highly variable clinical course with varying intensity of symptoms. The objectives of this study were to identify subgroups of DTF patients based on physical symptom burden and to compare symptom burden subgroups on health-related quality of life (HRQoL) and healthcare use (univariate and multivariate). METHODS: Desmoid-type fibromatosis patients from the United Kingdom and the Netherlands received cross-sectional questionnaires on HRQoL (EORTC QLQ-C30), DTF-specific HRQoL (DTF-QoL) and healthcare utilisation. Latent class cluster analysis was performed to identify subgroups based on patients' symptom burden using EORTC QLQ-C30 and DTF-QoL physical symptom items. Multivariate linear and logistic regression analyses were conducted to examine associations of symptom burden with HRQoL and healthcare utilisation, respectively. RESULTS: Among 235 DTF patients, four symptom burden clusters were identified, with low symptom burden (24%), intermediate symptom burden-low pain (20%), intermediate symptom burden-high pain (25%) and high symptom burden (31%). DTF patients with high symptom burden had clinically relevant lower HRQoL scores compared to patients with low and intermediate symptom burden (p < 0.001) and reported more general and DTF-related visits to their general practitioner compared to the low symptom burden cluster (p < 0.01). In the multivariate analyses, symptom burden was independently associated with both HRQoL and healthcare utilisation. CONCLUSIONS: This study identified four distinct subgroups of DTF patients based on their level of symptom burden, with a considerable number of patients being highly symptomatic. Knowledge of the level of symptom burden DTF patients experience can help to identify patients at risk of poorer outcomes and tailor supportive care to the individual needs of DTF patients.

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