Are we managing desmoid tumors correctly in Spain? Results of the first national survey

Summary

Introduction: The management of desmoid tumors has evolved in recent years toward a more conservative approach. Current guidelines prioritize active surveillance over surgery and highlight the role of novel targeted therapies. The aim of this study was to evaluate how well real-world clinical practice in Spain aligns with this evidence. Methods: A cross-sectional study was conducted using an anonymous survey distributed to members of the Spanish Association of Surgeons (AEC). Initial management strategies according to tumor location and knowledge of tumor biology (spontaneous regression) and emerging therapies (cryoablation, nirogacestat) were analyzed, comparing outcomes between specialized and non-specialized centers. Results: A total of 120 surveys were completed, with nationwide representation. Overall, surgery was the most common initial approach both for abdominal wall desmoids (72.5%) and for other locations (59.2%). Only 30% of respondents opted for active surveillance. Spontaneous regression was unknown to 48% of participants, cryoablation to 56.7%, and nirogacestat® to 70%. In contrast, when stratifying by surgeons from specialized centers, these percentages were almost reversed. Conclusions: There is considerable variability and lack of knowledge regarding the initial management of desmoid tumors in Spain, with marked differences between specialized and non-specialized centers. Surgery remains the predominant option in non-specialized centers, contrary to current guideline recommendations. Given the complexity of modern desmoid tumor management, there is an urgent need to promote education and referral of these patients to specialized reference centers.