Sarcoma / 2020 / Article / Tab 2

Research Article

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

Table 2

Top 10 most important issues according to the number of participating patients (n).

nPrevalence ratio (%)

Participating patients (total n = 16)a
Worries about tumour growth1062.5
Fear of the tumour growth and/or tumour growing into adjacent tissues or organs956.3
Feeling that there is something in your body that does not belong there743.8
Stress around check-ups during the follow-up637.5
Reaching a definite diagnosis is time consuming531.3
Not being able to sleep because of pain

Feeling frustrated about the “benign” diagnosis with malignant features531.3
Desmoid-type fibromatosis is unknown among most doctors531.3
Healthcare providers (total n = 31)
Worries about tumour growth1754.9
Experience of uncertainty during the course of disease1238.7
Lack of optimal treatment options and/or uncertainty about preferred treatment1032.3
Concerns about the future

an = 13 participating patients failed to provide a top 10. The cutoff value for inclusion in the DTF-specific HRQoL questionnaire is a prevalence ratio of >30%.