Table 1 Background characteristics of the focus group participants, the respondents to the importance questionnaire and the respondents to the experience questionnaire

Age (years):

18-24

0

0

3

0.9

2

0.2

25-34

1

4.2

1

0.3

9

1.2

35-44

1

4.2

13

4.1

32

4.4

45-54

9

37.5

38

11.8

89

12.3

55-64

9

37.5

81

25.2

204

28.1

65-74

3

12.5

113

35.2

227

31.3

75 or older

1

4.2

72

22.4

163

22.5

Gender:

male

8

33.3

167

52.0

333

46.1

female

16

66.7

154

48.0

389

53.9

Highest education:

none

0

0

7

2.3

11

1.6

Primary education (1)

0

0

26

8.5

59

8.4

Lower secondary education (2)

1

4.2

63

20.7

158

22.4

Upper secondary education (3)

1

4.2

64

21.0

167

23.7

Post-secondary non-tertiary education (4)

3

12.5

37

12.1

85

12.1

Short cycle tertiary education (5)

5

20.8

27

8.9

69

9.8

Bachelor (6)

7

29.2

59

19.3

111

15.8

Master/Doctoral (7 or higher)

7

29.2

21

6.9

32

4.6

Experienced health:

excellent

2

11.1

18

5.7

46

6.4

very good

3

16.7

57

18.0

102

14.2

good

6

33.3

172

54.3

367

51.0

reasonable

7

38.9

54

17.0

169

23.47

poor

0

0

16

5.1

36

5.0

Tumour type (more than 1 answer possible)

total 408

total 732

Digestive tract

6

17.1

58

14.2

205

28

Lower respiratory tract

3

8.6

61

15.0

67

9.2

Breast

9

25.7

45

11.0

171

23.3

Male reproductive organs

1

2.9

79

19.4

153

20.9

Skin

1

2.9

43

10.5

70

9.6

Blood, bone marrow and lymph nodes

7

20.0

29

7.1

45

6.1

Urinary tract

2

5.7

13

3.2

9

1.2

Female reproductive organs

3

8.6

16

3.9

73

10.0

Head and neck

1

2.9

16

3.9

4

0.5

Central nervous system

0

0

2

0.3

Bone or soft tissue

4

1.0

12

1.6

Endocrine glands

1

2.9

3

0.7

4

0.5

Eye and orbit

1

2.9

2

0.5

3

0.4

Treatment received (more than 1 answer possible)

surgery

21

45.7

230

44.6

492

46.9

chemotherapy

11

23.9

115

22.3

141

13.4

radiotherapy

12

26.1

125

24.2

257

24.5

hormone treatment

2

4.3

44

8.5

127

12.1

immune therapy

2

0.4

32

3.1

Treating specialist

surgeon

13

19.7

medical specialist/oncologist

13

19.7

radiologist/radiotherapist

8

12.1

oncology nurse

5

7.6

nurse practitioner

3

4.5

psychologist/social worker

6

9.1

general practitioner

12

18.2

physical therapist

2

3.0

dietitian

3

4.5

dermatologist

1

1.5

Stage of treatment

tests to acertain diagnosis

4

1.3

13

1.9

diagnosis known, treatment starts

4

1.3

8

1.2

during treatment

68

22.2

158

22.9

no further treatment possible

7

2.3

14

2.0

non-curative treatment

31

10.1

69

10.0

checks after treatment

168

54.9

374

54.1

treatment and checks after treatment are finished

15

4.9

42

6.1

I don’t know (anymore)

9

2.9

13

1.9