TY - JOUR A2 - Puri, Ajay AU - Timbergen, Milea J. M. AU - van der Graaf, Winette T. A. AU - Grünhagen, Dirk J. AU - Younger, Eugenie AU - Sleijfer, Stefan AU - Dunlop, Alison AU - Dean, Lucy AU - Verhoef, Cornelis AU - van de Poll-Franse, Lonneke V. AU - Husson, Olga PY - 2020 DA - 2020/07/26 TI - Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries SP - 2141939 VL - 2020 AB - Purpose. 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. Methods. 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. Results. 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 ( M2.2 vs. M1.5). HCPs ( n = 31) gave higher scores on most issues compared to patients ( M2.3 vs. M1.8). Conclusion. 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. SN - 1357-714X UR - https://doi.org/10.1155/2020/2141939 DO - 10.1155/2020/2141939 JF - Sarcoma PB - Hindawi KW - ER -