Desmoid-type fibromatosis (DTF) is a rare, non-metastasising soft tissue tumour, which by local growth can significantly impact health related quality of life (HRQL). We aimed to identify the most important HRQL-issues of DTF patients.
DTF patients and health care professionals (HCPs) from the Netherlands and the United Kingdom individually ranked 124 issues according to their relevance. Patients also completed the European Organisation for Research and Treatment of Cancer QLQ-C30 core questionnaire (EORTC QLQ-C30). Outcomes of both groups were used to identify the most important HRQL-issues.
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 scores of 3.0, 2.9 and 2.8 respectively out of a total of 4 points. British patients scored higher on most issues compared to Dutch patients. Similarly, all HCPs (n = 31) gave higher scores on most issues compared to patients (total mean score of 2.3 versus a total mean of 1.9 for patients). The EORTC QLQ-C30 sum of scores was relatively high with a mean score of 77 points out of 100.
Patients affected by DTF experience psychological issues regarding the unpredictable tumour growth behaviour. Validation in a large international cohort is needed to devise a HRQL-questionnaire specific to DTF patients to fully address their needs.
Clinical trial identification
Legal entity responsible for the study
Stichting Coolsingel Rotterdam.
All authors have declared no conflicts of interest.