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).
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
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%.
