Table 3 Assessment of EORTC QLQ-C30

1

Trouble doing strenuous activities

2.15 (0.99)

9 (69.2)

“that is simply just walking uphill or if I'm carrying heavy shopping bags then I will get a little bit out of breath, which I didn’t used to” (pt 12, 54 years, leiomyosarcoma)

“It’s not important to me whether or not I can carry that suitcase, but what is important is whether you have a partner who then carries your suitcase. Because I’d like to travel. So I’ve become completely dependent on somebody close to me who wants to travel with me. And wants to carry my things.”(pt 9, 59 years, leiomyosarcoma)

2

Trouble taking a long walk

2.00 (0.82)

10 (76.9)

“Do you have any trouble taking a long walk? Now, I don’t know what is considered long. I wasn’t sure, if I walk for an hour, that would probably be really tiring.” (pt 7, 39 years, endometrial stromal sarcoma)

“…Then you’ll get the concept: what is a long walk? And if I find 40 km a long walk, but someone else finds 5 km a long walk, then you already have the wrong picture for such a questionnaire. Because then I’ll fill in: yes, I am limited. But then I’m talking about a whole different walk than someone else.” (pt 8, 54 years, leiomyosarcoma)

3

Trouble taking a short walk

1.31 (0.63)*

3 (23.1)*

4

Had to stay in bed or chair

1.46 (0.97)*

3 (23.1)*

5

Needed help

1.23 (0.60)*

2 (15.4)*

6

Limited in work or daily activities

1.62 (0.77)

6 (46.2)

“I could go to work, and I could do my job at the moment, but I choose not to, because…So it’s not debilitating me so much that I can’t work, but I’m making a kind of conscious decision to not go to work, because I think it’s more important to look after my mental wellbeing and stay home. So I could do my job, but I think it’s better to take time out.”(pt 6, 57 years, leiomyosarcoma)

7

Limited in hobbies or leisure time activities

2.15 (1.21)

8 (61.5)

8

Shortness of breath

1.77 (0.73)

8 (61.5)

9

Pain

1.62 (0.96)

5 (38.5)

“But my bones started to bother me very much, so the chemo does have that effect.” (pt 8, 54 years, leiomyosarcoma)

10

Need to rest

2.23 (1.01)

10 (76.9)

11

Trouble sleeping

2.38 (1.04)

10 (76.9)

“ but a lot of it is simply the tumour pressing on my bladder, I think, where I have to get up in the night.” (pt 12, 54 years, leiomyosarcoma)

“This is difficult at time. After the surgeries. Then you get sleeping pills.” (pt 9, 59 years, leiomyosarcoma)

12

Felt weak

2.15 (0.90)

10 (76.9)

13

Lack of appetite

1.69 (1.11)

5 (38.5)

14

Nausea

1.46 (0.88)*

4 (30.8)

15

Vomiting (n = 12)

1.25 (0.87)*

1 (9.1)*

16

Constipation

1.92 (1.12)

6 (46.2)

17

Diarrhoea

1.46 (0.78)*

3 (23.1)*

“I suffer from constipation. I take those sachets [laxatives] for that, and then after three days I suffer from diarrhoea. So all that also is very annoying.” (pt 8, 54 years, leiomyosarcoma)

18

Tiredness

2.38 (1.04)

10 (76.9)

19

Pain interfering with daily activities

1.31 (0.86)*

1 (7.7)*

20

Difficulty concentrating

2.08 (1.04)

7 (53.8)

21

Felt tense

1.46 (0.78)*

4 (30.8)

22

Felt worried

2.23 (0.93)

10 (76.9)

“because I worried a little bit about the future, and how I'm going to plan things.”(pt 12, 54 years, leiomyosarcoma)

23

Felt irritable

1.69 (0.86)

6 (46.2)

24

Felt depressed

1.62 (0.96)

5 (38.5)

“Depressed? I would say sometimes it’s more sad. Depressed, I would say not at all, but it’s just again me just feeling a bit sad, so I’ll say not at all.” (pt 12, 54 years, leiomyosarcoma)

25

Difficulty remembering

1.85 (1.14)

6 (46.2)

“Sometimes I have problems to find the right words, it is like Alzheimers disease” (pt 2, age missing, leiomyosarcoma)

“Yes, I sometimes have the idea that I have dementia, can’t think of things or..[..] many things pass me by yes. And I just can’t think of things.” (pt 10, 55 years, adenosarcoma)

26

Interference with family life

2.08 (1.19)

6 (46.2)

27

Interference with social life

2.08 (1.12)

7 (53.8)

28

Financial difficulties

1.62 (1.04)

3 (23.1)*

“Look, if you have a permanent job and you’re in this, then your salary will continue to be paid. So that part, financially, that’s just less income, so to speak. So you notice that of course. But it doesn’t mean that we’re getting into trouble because of that.” (pt 10, 55 years, adenosarcoma)

“You go from 100 percent salary to 70 percent. [..] We have also bought another house. It had to be completely redesigned. The bathroom. Everything on the ground floor, because at first I thought I would get in a wheelchair. Everything downstairs. [..] I did not get into a difficult situation. But it's looming. There have been a lot of expenses.” (pt 8, 59 years, leiomyosarcoma)

29

Overall health (n = 12)

5.33 (1.23)

11 (84.6)

“I've just put nothing major, sore throat, slight aches in stomach, upper body, slightly fluey, so I've put number four” (pt 12, 54 years, leiomyosarcoma)

“Well, because then you just really feel the effect of the chemo. So the tiredness. That the food really less… So nauseous. And the food tastes less. And you’re busy trying to get back on track. So that health, there you really feel the effect during the chemo of course, yes, from that chemo.”(pt 11, 54 years, leiomyosarcoma)

“So when you’re asking about my health, like compared to before I was ill, how has my health changed, or compared to when I was feeling my worst, how has my health changed. So it’s kind of a bit of a nebulous question, in a way, if that makes sense.” (pt 6, 57 years, leiomyosarcoma)

30

Overall quality of life (n = 12)

5.17 (1.27)

11 (84.6)

“Yesterday evening we sat together with everyone outside again with the family and that’s it.. Those are the things that make you feel better.[..] But as nice as it is, you’re going to bed on time. Because you can’t take it.[..] Yes, but if I keep sitting and it gets 11 o’clock then I have to again the next day… Then I’ll be even more tired the next day.”(pt 10, 55 years, adenosarcoma)