Table 3 Preferences for timing of diagnosis disclosure (n = 217)

As soon as possible

208

95.9

110

67.5

< 0.001

Waiting

9

4.1

53

32.5

Got worse

3

33.3

12

22.6

Necessary

4

44.4

24

45.3

Not know at all

2

22.2

17

32.1

Reasons of the decision^a

 As soon as possible^b

(n = 208)

(n = 110)

 Make the most of life (e.g. ‘bucket list’)

97

46.6

62

56.4

0.099

 Collect memories

50

24.0

39

35.5

0.031

 Work on my/their relationships

85

40.9

41

37.3

0.533

 Tell loved ones my/their situation

79

38.0

41

37.3

0.901

 Come to terms with the diagnosis

141

67.8

74

67.3

0.926

 Be involved in decisions about my/their future care

105

50.5

58

52.7

0.703

 Make financial arrangements for with (their) family

65

31.3

31

28.2

0.571

 Access treatments and support

125

60.1

65

59.1

0.862

Other

17

8.2

4

3.6

0.121

Waiting^c

(n = 9)

(n = 53)

There is no cure / no benefit of knowing

3

33.3

9

17.0

0.356

Risk of incorrect diagnosis

0

0

5

9.4

1.000

It would cause me/them to feel depressed

4

44.4

36

67.9

0.259

Fear that people would treat me/them differently

1

11.1

11

20.8

0.675

To avoid unnecessary worry

6

66.7

39

73.6

0.696

To avoid putting strain on my/their relationships

4

44.4

11

20.8

0.201

Fear that knowing the diagnosis might make symptoms progress faster

2

22.2

17

32.1

0.709

So I/they could live normally for as long as possible

6

66.7

40

75.5

0.683

Other

0

0

2

3.8

1.000

It would make them feel bad about themselves

N/A

N/A

18

34.0