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

Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer
Olga HussonWinette T A van der Graaf

Abstract

Desmoid fibromatosis (DF) is a rare, unpredictable disease with no established, evidence-based treatments. Individual management is based on consensus algorithms. This study aimed to examine the specific health-related quality of life challenges faced by DF patients, current experiences and expectations of care. Twenty-seven DF patients were purposively sampled from The Royal Marsden Hospital. Two focus groups and 13 interviews (males 12, females 15; mean age at study 39.5 years) explored health-related quality of life issues and experiences of healthcare. Thematic content was analysed. 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. Some patients received an initial diagnosis of cancer, causing significant distress. 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 fr...Continue Reading

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Citations

Sep 26, 2019·Annals of Surgical Oncology·Rebecca A Gladdy, Abha A Gupta
Sep 19, 2019·Annals of Surgical Oncology·Winan J van HoudtWinette T A van der Graaf
Nov 30, 2019·Psycho-oncology·Katrina M IngleyAbha A Gupta
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May 12, 2021·Current Opinion in Oncology·Nicolas PenelWinette T A van Der Graaf

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