Table 2.

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

	n	Prevalence ratio (%)
Participating patients (total n = 16)a
Worries about tumour growth	10	62.5
Fear of the tumour growth and/or tumour growing into adjacent tissues or organs	9	56.3
Feeling that there is something in your body that does not belong there	7	43.8
Stress around check-ups during the follow-up	6	37.5
Pain	6	37.5
Reaching a definite diagnosis is time consuming	5	31.3
Not being able to sleep because of pain
Feeling frustrated about the “benign” diagnosis with malignant features	5	31.3
	5	31.3
Desmoid-type fibromatosis is unknown among most doctors	5	31.3
Healthcare providers (total n = 31)
Worries about tumour growth	17	54.9
Experience of uncertainty during the course of disease	12	38.7
Pain	11	35.5
Lack of optimal treatment options and/or uncertainty about preferred treatment	10	32.3
Concerns about the future
	10	32.3

^a n = 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%.