Abstract

Identification and assessment of health related quality of life issues in patients with sporadic desmoid-type fibromatosis: a literature review and focus group study

Highlights

  • MethodsDesmoid-type fibromatosis (DTF) is a soft tissue tumour that arises from musculoaponeurotic structures

  • No desmoid-type fibromatosis (DTF)-specific questionnaires were identified in this literature review (Table 1)

  • The MD Anderson Symptom Inventory (MDASI) measures the severity of 13 cancer-related symptoms experienced by the patient during the previous 24 h

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Summary

Introduction

Desmoid-type fibromatosis (DTF) is a soft tissue tumour that arises from musculoaponeurotic structures. It is incapable of metastasising and is often described as a benign tumour in clinical practice. Due to its local aggressive behaviour and its known tendency of local recurrence after initial surgical resection, it is categorised as a borderline tumour [1]. Desmoid-type fibromatosis is rare, with a reported incidence of 5.4 new cases per million persons per year in the Dutch population [2]. Two types can be distinguished: sporadic DTF with extra-abdominal or abdominal wall tumour formation and familial adenomatous polyposis (FAP)-related DTF with intra-abdominal tumour formation [3, 4]

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