Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries
Table 1
Clinical characteristics of 29 participating patients.
Total group (%)a
Dutch patients (n = 17)
British patients (n = 12)
Sex
Male
10
(35%)
5
(29%)
5
(42%)
Female
19
(65%)
12
(71%)
7
(59%)
Median age in years at the time of questionnaires (IQR)b
43
(36–55)
44
(36–55)
41
(32–56)
Median age in years at the time of diagnosis (IQR)c
38
(30–48)
38
(30–48)
37
(28–50)
Tumour localisation
Abdominal wall
2
(7%)
2
(12%)
0
(0%)
Intra-abdominal
10
(35%)
8
(47%)
2
(17%)
Extremity/girdles/chest wall
15
(52%)
6
(35%)
9
(75%)
Head/neck/intrathoracic
1
(3%)
1
(6%)
0
(0%)
Missing value
1
(3%)
0
(0%)
1
(6%)
Recurrent disease
Yes
6
(21%)
2
(12%)
4
(33%)
No
21
(72%)
15
(88%
6
(50%)
Missing value
2
(7%)
0
(0%)
2
(17%)
Received treatments (some patients gave multiple answers)
Wait and see
21
12
9
Surgery
14
8
6
Radiotherapy
4
1
3
Chemotherapy
5
1
4
Nonsteroidal anti-inflammatory drugs
8
1
7
Hormonal treatment
7
2
5
Pain management
9
0
9
Physiotherapy
7
3
4
Occupational therapy
2
1
1
Currently receiving any active form of treatment
Yes
9
(31%)
0
(0%)
9
(75%)
No
19
(66%)
17
(100%)
2
(17%)
Missing value
1
(3%)
0
(0%)
1
(8%)
Comorbidity (some patients gave multiple answers)
No
11
6
5
Arthritis or long-term joint problem
3
2
1
Asthma or long-term chest problem
4
2
2
Diabetes
1
1
0
High blood pressure
1
0
1
Kidney or liver disease
1
1
0
Long-term back problem
6
3
3
Long-term mental health problem
2
2
0
Long-term neurological problem
1
1
0
Physical disability
2
1
1
Othersd
3
2
1
Missing value
2
2
0
aPercentages may not add up to 100% due to rounding up of decimals. bAnswered by n = 21 participating patients. cAnswered by n = 29 participating patients. dIncluding digestive problems, coeliac disease lactose intolerance, and iron deficiency.
