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The Desmoid Tumor Research Foundation

July 2020

Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries

Author Information

Timbergen MJM(1, 2), van der Graaf WTA(3,4), Grunhagen DJ(1), Younger E(5,6), Sleijfer S(2), Dunlop A(5), Dean L(5), Verhoef C(1), van de Poll-Franse LV(7,8,9), Husson O(3,5,6,7).

(1)Dept of Surgical Oncology, Erasmus MC Cancer Institute, Rotterdam, NE. (2)Dept of Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, NE. (3)Dept of Medical Oncology, The NE Cancer Institute, Amsterdam, NE. (4)Dept of Medical Oncology, Radboud Univ Medical Centre, Nijmegen, NE. (5)Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, UK. (6)Division of Clinical Studies, Institute of Cancer Research, Royal Marsden NHS Foundation Trust, London, UK. (7)Division of Psychosocial Research & Epidemiology, The NE Cancer Institute, Amsterdam, NE. (8)Dept of Medical & Clinical Psychology, Tilburg Univ, NE. (9)Dept of Research, NE Comprehensive Cancer Organisation (IKNL), Eindhoven, NE.

Publication

Sarcoma

Summary

Desmoid-type fibromatosis (DTF) is a rare, nonmetastasising soft tissue tumour. Symptoms, unpredictable growth, lack of definitive treatments, and the chronic character of the disease can significantly impact health-related quality of life (HRQoL). We aimed at identifying the most important HRQoL issues according to DTF patients in two countries, in order to devise a specific HRQoL questionnaire for this patient group. DTF patients and healthcare providers (HCPs) from the Netherlands and the United Kingdom individually ranked 124 issues regarding diagnosis, treatment, follow-up, recurrence, living with DTF, healthcare, and supportive care experiences, according to their relevance. Descriptive statistics were used to calculate priority scores. The most highly ranked issues by patients (n = 29) were issues concerning "tumour growth," "feeling that there is something in the body that does not belong there," and "fear of tumour growth into adjacent tissues or organs" with mean (M) scores of 3.0, 2.9, and 2.8, respectively (Likert scale 1-4). HCPs (n = 31) gave higher scores on most issues compared to patients (M 2.3 vs. M 1.8).

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