Pain burden in desmoid tumor patients: a survey of the French Advocacy Group SOS Desmoid.

INTRODUCTION: The French Patient Advocacy Group SOS Desmoid conducted a survey to measure the pain burden of desmoid tumor patients. MATERIAL AND METHODS: We used a structured questionnaire to measure the occurrence and consequences of pain. RESULTS: The pain occurrence was approximately 63%. In one-third of the cases, the pain was permanent. This pain led to severe social and economic consequences. DISCUSSION: The occurrence of pain and its consequences are underestimated among these patients. Pain needs to be closely and precisely measured and monitored in future clinical trials to assess the efficacy of proposed treatments better.