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The Desmoid Tumor Research Foundation

August 2018

Desmoid fibromatosis through the patients’ eyes: time to change the focus and organisation of care?

Author Information

Husson O(1)(2), Younger E(3), Dunlop A(3), Dean L(3), Strauss DC(3), Benson C(3), Hayes AJ(3), Miah A(3), van Houdt W(3), Zaidi S(3), Smith M(3), Williams J(4), Jones RL(3)(5), van der Graaf WTA(3)(5).

(1)Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, SW3 6JJ, UK. (2)Div of Clinical Studies, Institute of Cancer Research, London, SW3 6JJ, UK. (3)Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, SW3 6JJ, UK. (4)Dept of Anaesthetics and Pain Management, Royal Marsden NHS Foundation Trust, London, SW3 6JJ, UK. (5)Div of Clinical Studies, Institute of Cancer Research, London, SW3 6JJ, UK.

Publication

Support Care Cancer

Summary

This study aimed to examine the specific health-related quality of life challenges faced by DF (Desmoid Fibromatosis) patients, current experiences and expectations of care. Twenty-seven DF patients were purposively sampled from The Royal Marsden Hospital. Discussions revealed four key themes (diagnostic pathway; treatment pathway; living with DF; supportive care). Diagnostic delay resulted from lack of recognition by patients and healthcare professionals. Treatment decisions were challenging, and patients experienced uncertainty among clinicians about optimal therapies. Side-effects of treatment were severe, including fatigue, nausea, anorexia, low libido and depression. Pain was the most debilitating symptom and dependency on painkillers was a significant concern. Functional limitation and restricted mobility frequently affected daily activities. Patients experienced difficulty accomplishing their role in society; relationship problems, caring for children, employment and financial difficulties. Social isolation and lack of understanding were common. The psychological impact of this "life-changing and life-long" condition was profound. All patients requested knowledgeable healthcare professionals, more information, continuity of care and peer support. DF patients face complex physical, psychological and practical challenges. Comprehensive care services are needed. Increasing awareness may help to improve diagnostic pathways and overall patient experience.

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