The importance of patient reported functional outcome in paediatric desmoid fibromatosis

Desmoid fibromatosis (DF) is a heterogeneous condition with lack of consensus regarding therapy. Fatality is rare but repeated surgery prevalent. Functional assessment for this group is not well established, although we believe it to be an important marker of treatment success. At present there is no validated objective or subjective functional assessment tool designed for benign but locally invasive disease