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

Publication

Sarcoma

Summary

We aimed at identifying the most important health-related quality of life (HRQoL) issues according to desmoid-type fibromatosis (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). British patients scored higher on most issues compared to Dutch patients (M 2.2 vs. M 1.5). HCPs (n?=?31) gave higher scores on most issues compared to patients (M 2.3 vs. M 1.8). This study identified the most relevant issues for DTF patients, which should be included in a DTF-specific HRQoL questionnaire. Additionally, we identified differences in priority scores between British and Dutch participating patients. Field testing in a large, international cohort is needed to confirm these findings and to devise a comprehensive and specific HRQoL questionnaire for DTF patients.

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